SMA News & Perspectives: Recent Episodes
SMA News Today
In episode 158, host Kevin Schaefer talks with Alberto Lopez from Los Angeles County, California. Alberto is a consultant and a father of three daughters, one of whom has SMA. He discusses adapting to his daughter's diagnosis years ago, connecting with the SMA community, and navigating life as a single parent. Alberto's mindset is one of optimism and communication, which is something he hopes to help others in the SMA community strive toward. ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 157, host Kevin Schaefer talks with Delphine Andrews from Durham, North Carolina. Delphine is a life coach and disability advocate living with SMA. She talks with Kevin about her journey toward accepting herself, advocating for others, and transitioning to her current career path. She also discusses intersectionality, managing caregivers, and gives advice on life and relationships.Delphine's website: https://disabilityreclaimed.com/ Delphine's Instagram: https://www.instagram.com/disability_reclaimed/ ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 156, host Kevin Schaefer talks with Maylan Chavez and Sory Rivera, two friends with SMA who host the “Access Granted” podcast together. Maylan is from Hialeah, Florida, and Sory is from Tyler, Texas. They talk about the evolution of their friendship, forming connections with others in the SMA community, and empowering others with disabilities through storytelling. ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 155, host Kevin Schaefer talks with Jasmine Jackson from Vancouver, Washington. Jasmine is a development and marketing manager, digital creator, and also a mother living with SMA type II. She talks about growing up with SMA, her journey toward motherhood, connecting with the SMA community, and becoming an advocate for other disabled parents.Jasmine’s Instagram: https://www.instagram.com/my_wheellife/ ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 154, host Kevin Schaefer talks with Coach Damon Vincent from Lafayette, Louisiana. Damon is an adaptive fitness specialist who works with clients with various rare diseases and disabilities, including SMA. He talks about his journey as a personal trainer, living with his own rare disease, and building a community with others in his field.Damon’s website: https://fitnessforspecialneeds.com/ ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 153, host Kevin Schaefer talks with Annie Heathcote from Mazomanie, Wisconsin. Annie is a multi-business owner, social media influencer, author, and lifelong disability advocate whose life and work embody the belief that disability doesn’t mean inability. Diagnosed with Spinal Muscular Atrophy (SMA) at just 13 months and in a wheelchair by age 2, she has dedicated her life to breaking barriers, championing accessibility, and inspiring others with her message of resilience and faith.Visit our website at www.smanewstoday.com Follow us:IG: instagram.com/smanewstodayFacebook: facebook.com/SMAnewstodayX: x.com/smanewstodayTo take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 152, host Kevin Schaefer talks with Kamil Goungor from Athens, Greece. Kamil, who has SMA type II, works for the European Network on Independent Living and is the co-founder and chair of the Greek independent living organization, i-living. In this episode, Kamil shares his experiences growing up with SMA, pursuing education and career opportunities, and advocating for the disabled community.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 151, host Kevin Schaefer talks with his colleague, Anton Paras. Anton is a marketing executive for Bionews Inc., the publisher of SMA News Today, and he lives in the Bay Area, California. Recently, Anton went with Kevin to Anaheim, California, for part of the annual Cure SMA conference. There, they worked on a video about theme park accessibility and interviewed multiple people in the SMA community. During this conversation, Anton reflects on this experience, shares his perspective on engaging with rare disease communities, and offers insight into what others in the digital health space can do to better support patients and caregivers.================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 150, host Kevin Schaefer talks with Jenna and Tanya Vega from Palm Springs, California. Jenna and Tanya discuss their seven years together, navigating daily life with SMA, and their wedding last year. They also share tips and advice for other couples in the SMA community.
In episode 149, host Kevin Schaefer talks with Dr. Jessica Keogh from Philadelphia, Pennsylvania. An educator, disability advocate, and certified life coach, she discusses growing up with SMA, living independently, navigating relationships, and becoming an advocate.Jessica’s website: https://www.faithabovemyability.org/================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 148, host Kevin Schaefer talks with Ashley Fox and Madeline Engel from California. Ashley has SMA, and Madeline became her best friend and caregiver when they were in college. They discuss the nuances of friendship and caregiving, plus touch on confronting internalized ableism and navigating graduate school and careers.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 147, host Kevin Schaefer talks with Brandi Lewis from Birmingham, Alabama. A blood disorder awareness educator, TEDx speaker, writer, and nonprofit founder, Brandi is passionate about helping others diagnosed with chronic illnesses. She herself has been diagnosed with aplastic anemia and PNH, the symptoms of which began in 2009. Her nonprofit, Brandi’s Blessings, was created to spread awareness and support blood disorder patients. She notes that her greatest accomplishment is having saved three lives by encouraging people to register to become bone marrow donors. Brandi is a dog lover of a labradoodle, Milo, and thinks laughter is the best medicine. Follow Brandi on Instagram at @_brandilewis_!Brandi’s website: www.brandilewis.comBrandi’s column: https://pnhnews.com/category/columns/from-fear-to-fighter-a-column-by-brandi-lewis/================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
In episode 146, host Kevin Schaefer talks with TJ Wall from Texarkana, Texas. TJ is working on his master’s in education at Texas A&M University, and he hopes to become a high school football coach. He talks about growing up with SMA, his love of sports, and his future aspirations.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 145, host Kevin Schaefer talks with Carrie Manriquez from Sacramento, CA. Carrie is an elementary school principal, and her 24-year-old son Ryan has SMA type 2. She talks about her experiences as a parent and caregiver, connecting with the SMA community, and helping Ryan transition to adulthood.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 144, host Kevin Schaefer talks with Doug McCullough from central New Jersey. The author of “A Billion People in the Shadows,” a new book about understanding disability, Doug previously worked at Johnson & Johnson Pharmaceuticals and has a background in public speaking. He talks about growing up with SMA type 3, navigating employment with a disability, and advocating for an inclusive society.Doug’s book: https://publishyourpurpose.com/books/a-billion-people-in-the-shadows-the-ultimate-1-hour-guide-to-understanding-disability/================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 143, host Kevin Schaefer talks with Cory Lee from Lafayette, Georgia. A renowned expert on disabled traveling, he has visited all seven continents from his wheelchair. He runs the Curb Free With Cory Lee blog and takes part in speaking engagements around the world. Join the two as they discuss growing up with SMA, Cory’s travel origins, and his hopes for the future of accessible travel.
Cory’s Instagram: https://www.instagram.com/curbfreecorylee/
Cory’s website: https://curbfreewithcorylee.com/
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
In episode 142, host Kevin Schaefer talks with Savannah and Will Huff from Thomasville, Georgia. Savannah, who has SMA type 3, met Will in 2018. Listen in as they discuss their marriage, careers, and the intersection of married life and caregiving.================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 141, host Kevin Schaefer talks with Quinn Bucher (he/they) from Athens, Ohio. A student at Earlham College studying theater, he talks about growing up in an arts-oriented household, making theater inclusive for disabled students, and the intersectionality of being trans and having SMA.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7), Samaritans in the U.K (samaritans.org), or Samaritans of Singapore in Singapore (sos.org.sg).In episode 140, host Kevin Schaefer talks with Lucy Trevino from Chicago, Illinois. Lucy is passionate about academia and advocacy, and she volunteers for the organization Chicago Scholars. She discusses living with SMA Type 3, her familial relationships, and the importance of disability inclusion.
In episode 139, host Kevin Schaefer talks with Dianna Warren from Canton, Ohio. Dianna is an ambassador for Ms. Wheelchair USA, and for 32 years she ran a disability bowling league. She discusses these experiences, living with SMA Type 3, and her marriage of 44 years.
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 138, host Kevin Schaefer talks with Nolan, who lives with SMA, and Blake Shofner from Princeton, Illinois. The brothers discuss their dynamic as siblings and business partners, as they are the founders of Mullet Bros Co. They also discuss the importance of humor in their lives and how Nolan’s SMA has impacted them.================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums.
In episode 137, host Kevin Schaefer talks with Jared Wayland from Ontario. Jared discusses growing up with SMA type 3 and becoming a husband and father. He also talks about his passion for music and graphic design and shares advice about building confidence with SMA.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
In episode 136, host Kevin Schaefer talks with returning guest Shaniqua Granby as she shares life updates and discusses how she navigates struggles and embraces community.================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 135, host Kevin Schaefer talks with Ryan Kinnear from Glendale, Arizona. An avid fisherman and outdoor enthusiast, he uses assistive technology to pursue his passions. Ryan talks about using this technology, growing up with SMA, and managing daily life.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 134, host Kevin Schaefer talks with Dr. Edward Smith from Hillsborough, North Carolina. Dr. Smith spent the majority of his career as a clinical neurologist, and Kevin was one of his longtime patients. They talk about the state of SMA research and the work Dr. Smith is doing now. SMA News Today contributor Michael Morale also joins to talk with Dr. Smith about his treatment experiences.================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
In episode 133, host Kevin Schaefer talks with Rebecca Mulhall from Cleveland, Ohio. Rebecca has three kids, and her youngest two are twins with SMA. Her son with SMA also has Down syndrome. Rebecca talks about the intersection of these disabilities, her family’s daily life, and her advice for other parents in the SMA community.================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums.
In episode 132, host Kevin Schaefer talks with Collin Pollock from Garden Grove, California. Collin and his wife, Kyla, run a barbeque sauce business called WheelyQ. He discusses becoming a business owner, growing up with SMA, and being a husband and father.================================Collin’s website: https://wheelyq.com/================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums.
In episode 131, host Kevin Schaefer talks with Candis Welch from Los Angeles, California. A disability advocate, DEI practitioner, and consultant, Candis won the 2023 Ms. Wheelchair California competition. She talks about growing up with SMA, the importance of representation, and how she’s cultivated an independent life.
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 130, host Kevin Schaefer talks with Andrew Cherico from Orlando, Florida. Andrew is a sophomore at the University of Central Florida and is studying sports journalism. He talks about growing up with SMA, shifting his mindset as a teenager, and connecting with others in the SMA community.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums.
In episode 129, host Kevin Schaefer talks with Rylie Erbacher and her mom, Stephanie, from Iowa. Rylie has SMA, and she was recently recognized as one of 10 artists from around the country honored in Washington, D.C., for her accomplishments as a Rare Artist, an artist living with a rare disease. She and Stephanie discuss this journey, as well as what their daily lives look like.
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 128, host Kevin Schaefer talks with Jenna Coburn from Palm Springs, California. Jenna is a social media and marketing manager for Access Medical, and she has SMA. She talks about her family life, how she started her career as a teenager, her relationship with her girlfriend, and the intersectionality of her LGBTQIA+ and disability identities.
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums.
In episode 127, host Kevin Schaefer talks with Kevan Chandler, founder of the nonprofit organization We Carry Kevan. In 2016, Kevan used an adaptive backpack so that his friends could carry him on a trip across Europe. This adventure formed the basis of his nonprofit. Kevan is now an author, speaker, and world traveler. He has SMA type 2, and he currently lives in Indiana with his wife, Katie.
In episode 126, host Kevin Schaefer talks with Janelle Fiesta and Antoine Vuong from Honolulu, Hawaii. They are an interabled couple who met when they were both in high school. Janelle shares her experiences living with SMA and Antoine talks about being her partner. They also discuss going to the 2022 Cure SMA conference in Anaheim, California. ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 125, host Kevin Schaefer talks with Brooklyn and Keanna Nichols from Athens, Alabama. Brooklyn is a middle schooler with SMA who co-authored a children’s book called “A Do Nothing Day” with her mom’s cousin. She and her mom talk about inclusivity, living with SMA, and the origins of the book. ================================To order a copy of the book, email Keanna at robertnkeanna@icloud.com. ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 124, host Kevin Schaefer talks with Steve and Brittany Bingman from Mount Juliet, Tennessee. Steve is an administrative officer at the U.S. department of veteran affairs, and he lives with SMA. Brittany is Steve’s wife, and she is a licensed social worker. They discuss their marriage and family, their daily lives, and getting involved with the SMA community. ================================Steve’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/31-days-sma-superior-motivational-attitude/ Brittany’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/31-days-sma-being-wife-mom-caregiver-spouse/ ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 123, host Kevin Schaefer talks with returning guests LaMondre Pough and Gabrielle Runyon, two Black Disabled advocates. In recognition of Black History Month, LaMondre and Gabrielle share their experiences growing up with SMA, the intersectionality of their identities, and the work they’re doing now.================================To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 122, host Kevin Schaefer talks with three of his coworkers from BioNews Inc., the parent company of SMA News Today. Brittany Foster is BioNews’ HR Coordinator, and she lives with pulmonary hypertension. Brad Dell is the Director of Community Content, and he lives with cystic fibrosis. Matt Lafleur is the Culture Coordinator, and he lives with Friedreich’s ataxia.In anticipation of Rare Disease Day 2023, these advocates share their experiences, pitfalls, and triumphs living with their respective conditions.================================Brittany’s column: https://pulmonaryhypertensionnews.com/recharged-and-rewired-brittany-foster/Brad’s column: https://cysticfibrosisnewstoday.com/victorious-brad-dell/Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/================================To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 121, host Kevin Schaefer talks with Patricia Panzarino, who goes by her musician name, Pidgie. Pidgie is a singer and songwriter from Cape Cod, Massachusetts, and she has SMA Type 2. She discusses growing up in a pre-ADA era, building her music career, and starting Evrysdi. ================================To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 120, host Kevin Schaefer talks with Dom Evans (he/they), LGBTQ and disability activist and filmmaker. Dom discusses his background, growing up with SMA, and how he became an activist. He also talks about his longtime partner and their relationship.Note: This podcast includes thoughts about suicide. If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7), Samaritans in the U.K (samaritans.org), or Samaritans of Singapore in Singapore (sos.org.sg).================================To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 119, host Kevin Schaefer talks with Chaz Hayden, a young adult author with SMA. Chaz’s debut novel, The First Thing About You, tells the story of a 15-year-old boy with SMA named Harris who wants to reinvent himself. Kevin and Chaz discuss themes in the book, the personal experiences that influenced the story, and Chaz’s advice for other writers. ================================Chaz’s website: https://www.chazhayden.com/ The First Thing About You: https://www.chazhayden.com/the-first-thing-about-you ================================To learn more about Evrysdi, please visit www.ApprovedForSMA.com ================================To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 117, host Kevin Schaefer talks with Delphine Andrews and Kevin Davis from North Carolina. Delphine has SMA and she began dating Kevin in early 2020. They discuss their careers, daily lives, and the nuances of their relationship.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 116, host Kevin Schaefer talks with Shaniqua Granby from Virginia Beach, Virginia. Shaniqua is an equal employment opportunity specialist, and she has SMA Type 3. She discusses going to law school, her faith and how it relates to her disability, and the advice she has for others with SMA.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 115, host Kevin Schaefer talks with Jose Flores from Miami, Florida. Jose is a bestselling author and motivational speaker who lives with SMA Type 3. He discusses his journey toward entrepreneurship, his marriage and family life, and becoming connected to the SMA community.
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Jose’s website: https://www.joseinspires.com/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 114, host Kevin Schaefer talks with Daniele Johnson from Evansville, Indiana. Daniele and her husband’s youngest son, Anthony, has SMA type 0. She talks about her son’s diagnosis, pursuing treatment, and how she and her family have adapted to life with SMA.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 113, host Kevin Schaefer talks with Dustin Swafford from Georgia. Dustin has been playing and coaching a power soccer team for years, and his team recently won the national championship. He discusses his love of sports, having his brother as his primary caregiver, and starting his own financial business.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 112, host Kevin Schaefer talks with Lexi Villa from Torrance, California. Lexi works in retail and shares her life with SMA on social media. She discusses moving away from home at a young age, becoming connected with the SMA community, and falling in love with her best friend from childhood.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 111, host Kevin Schaefer talks with Steven Verdile, a graphic designer and media creator from New York City. Steven is also the founder and editor-in-chief of The Squeaky Wheel, an online disability satire publication. He discusses living with SMA, working for NBC, and disability representation in media.
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Steven’s website: https://www.stevenverdile.com/
Steven’s IG: https://www.instagram.com/stevenverdilecreative/
The Squeaky Wheel: https://the-squeaky-wheel.com/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 110, host Kevin Schaefer welcomes back to the podcast Ben Mattlin, an author and disability rights advocate. His upcoming book is called “Disability Pride: Dispatches from a Post-ADA World,” and is set to release on November 15, 2022. Ben discusses the evolution of this book, and what Disability Pride means to him.
Pre-order Disability Pride: https://www.penguinrandomhouse.com/books/676271/disability-pride-by-ben-mattlin/ Ben’s website: www.benmattlin.com ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 109, host Kevin Schaefer chats to several attendees from this year’s Cure SMA conference in Anaheim, California. Ashley Fox, Ryan Manriquez, and Kyle Harris discuss reuniting after such a long time, connecting with other adults with SMA, and share their highlights from the conference.
To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
In episode 108, host Kevin Schaefer talks with Logan Nantz from southern Indiana. Logan’s daughter Hayden is two years old and has SMA. They discuss Logan family’s story, as well as the news that Genentech recently approved Evrysdi for infants under the age of two months.
Evrysdi story: https://smanewstoday.com/news-posts/2022/06/01/sma-treatment-evrysdi-gets-fda-approval-babies-under-2-months-old/ Logan’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/07/31-days-of-sma-logan-nantz/ ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
In episode 107, host Kevin Schaefer talks about mental health with LGBTQ+ and disability advocates. Panelists include Ali Ramos (she/her), licensed social worker; Sherry Toh (she/they), columnist for SMA News Today; and Hugo Trevino (he/him), who works in academia. They all share their experiences managing their own mental health and offer advice for others in disability and LGBTQ+ spaces.
Ali’s Work Facebook page: https://www.facebook.com/aliramostherapy Sherry’s column: https://smanewstoday.com/wandering-the-lines-sherry-toh/ Hugo’s Instagram: https://www.instagram.com/htrevin2/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
In episode 106, host Kevin Schaefer talks with a group of rare disease and disability advocates about women’s mental health. Panelists include Charlene Marshall, licensed mental health professional, and columnist for Pulmonary Fibrosis News; Brianna Albers, columnist for SMA News Today; Gabrielle Runyon, a college student with SMA at the University of Louisville; and Jessie Madrigal writer for endometriosis.net and mental health advocate. They all share their experiences managing their mental health and offer advice for others in disability spaces.
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Charlene’s column: https://pulmonaryfibrosisnews.com/living-with-ipf-charlene-marshall/
Brianna’s column: https://smanewstoday.com/the-wolf-finally-frees-itself-brianna-albers/
Gabrielle’s Instagram: https://www.instagram.com/gab.davetta/
Jessie’s Instagram: https://www.instagram.com/weemissjess
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
In episode 105, host Kevin Schaefer talks with rare disease and disability advocates about men’s mental health. Panelists include Paris Dancy, licensed mental health professional, and columnist for Cushing’s Disease News; Matt Lafleur, columnist for Friedreich’s Ataxia News; Michael Morale, multimedia specialist for SMA News Today; and Ty Dykema, artist and disability advocate. They all share their experiences managing their mental health and offer advice for others in disability spaces.
Paris’ column: https://cushingsdiseasenews.com/surviving-and-thriving-paris-dancy/ Matt’s column: https://friedreichsataxianews.com/little-victories-matthew-lafleur/ Michael’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodlFLsjQBls3fM_EOnm4o6GV Ty’s Instagram pages: https://www.instagram.com/breachthelevee/
https://www.instagram.com/tmd.art/
To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
In episode 104, host Kevin Schaefer talks with Ben Lou from San Diego, California. Ben is a student at MIT, planning to double major in math and physics. He discusses his lifelong love for learning, growing up with SMA, and the importance of disability representation in STEM education.
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Article about Ben: https://smanewstoday.com/news-posts/2021/10/11/sma-ben-lou-pursuing-academic-dreams-mit/
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
In episode 103, host Kevin Schaefer talks with Stephen Mikita and Arya Singh, two individuals with SMA who have years of experience with clinical trials. Stephen, 66, was an Assistant Attorney General for the state of Utah for more than 30 years, representing the three largest state agencies providing services and protections for individuals with disabilities. As one of the oldest survivors of SMA, Mr. Mikita has been uniquely positioned to advocate for the patient perspective at every stage of drug development. Arya is a senior at Yale and has dedicated much of her childhood to clinical research. Her parents are the founders of The SMA Foundation, which has brought some of the world’s greatest scientists into SMA research. Arya herself has been a part of clinical research, and this experience was the inspiration behind a children’s book, Courageous Calla & The Clinical Trial. She is a member of the New Haven Commission on Disabilities, with plans to obtain her undergrad degree this spring and a master’s on public health next year.
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The SMA Foundation: https://smafoundation.org/
Arya’s book: https://www.amazon.com/Courageous-Calla-Clinical-Trial-Singh/dp/B0892B4D8G
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
In this episode, host Kevin Schaefer talks to Amber-Joi Watkins, an SMA mom and advocate. Amber-Joi talks about raising her daughter, Celine, and becoming part of the SMA community. She also discusses her daughter’s treatment journey, their daily lives, and shares some advice she has for other parents.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how men with spinal and bulbar muscular atrophy (SBMA) had abnormally small nerves in the limbs, especially the arms, as measured by ultrasound.
Alyssa Silva’s recent post about her hospital stay has DeAnn thinking about her own time in the hospital. Find out what about SMA caught her off guard and how she dealt with it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
In this episode, host Kevin Schaefer talks with John Milligan from Austin, Texas. John is a Senior Manager in RND at Asuragen, a biotechnology company. They chat about the state of SMA testing, newborn screenings, the evolution of SMA research, and his day-to-day life.
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Learn more about Asuragen: https://asuragen.com/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
SMA News Today’s multimedia associate, Price Wooldridge, discusses how screening for spinal muscular atrophy is now available to 87% of all newborns in the United States, according to Cure SMA.
After noticing the lack of disability representation during the Olympic Opening Ceremony, DeAnn decided to post about. She shares her views and how she was surprised by the response from her post on the SMA News Today forums.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the FDA is reviewing a request that the use of Evrysdi, an oral and at-home SMA treatment, be extended to pre-symptomatic babies.
Also, although exciting, getting a new wheelchair isn’t always easy. DeAnn can relate to columnist Brianna Albers recent article, “A Year Later, I’m Still Wearing Old Shoes.” She goes into detail about the process and what she continues to struggle with.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 100, host Kevin Schaefer talks with Gabrielle Runyon (she/her) from Louisville, Kentucky. Gabrielle is a sophomore at the University of Louisville, studying psychology. She talks about growing up with SMA, transitioning to college, and advocating for disabled individuals.
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Gabrielle’s 31 Days of SMA Story: https://smanewstoday.com/31-days-of-sma/2020/08/24/31-days-of-sma-gabrielle-runyon/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a "significant" burden in direct and indirect costs is evident in caring for people with spinal muscular atrophy, a large review study finds.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how scientists gave a new, noninvasive type of antisense oligonucleotide therapy to symptomatic SMA mice and saw promising results.
Also, with a condition like SMA it can be easy to become overwhelmed. In Alyssa’s latest column she writes about that feeling and how challenging herself in other areas of her life help her cope with challenges SMA throws at her.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
In episode 99, host Kevin Schaefer talks with two mothers from the SMA community. Trudy Citovic lives in Oregon, and her daughter Alina has SMA.
As an advocate for newborn screenings, she talks about the role SMA has played in her experience of motherhood. Carli Hamilton is a social media influencer and mother who has SMA. She lives in Utah with her husband and daughter. She shares her thoughts on becoming a mother and the nuances of parenting with a disability.
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Learn more about newborn screenings here: https://smanewstoday.com/news-posts/2021/12/03/muscular-dystrophy-canada-novartis-maritime-newborn-sma-screening-program/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how a small group of children given the gene therapy after Spinraza's start showed only slight further gains; early treatment most important.
Also, in her latest vlog DeAnn Runge explores the topic of furry friends. Pets are an important aspect of her life. She explains how she feels pets can benefit the lives of anyone living with SMA.
Watch here: https://youtu.be/9Etax9E4cH0
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how surgery to correct kyphoscoliosis — an abnormal curvature of the spine found in children with SMA type 1 — also allows Spinraza treatment.
As Ari Anderson prepares himself for upcoming surgery, he looks for a suitable mantra to help get him through the fight ahead. In his recent article, “Preparing for Surgery, I Search for a New Mantra,” he chronicles why he needs surgery and how having a phrase to help boost his morale is helpful to maintain that fighting spirit.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how men with spinal muscular atrophy or Duchenne muscular dystrophy who played wheelchair hockey showed quality of life gains relative to others.
Also, when you rely on others for personal care, maintaining privacy can be difficult. DeAnn Runge talks about a situation that arose that has her questioning the level of privacy in her life.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock's global apitegromab trial, likely to open next year, will test its muscle-directed therapy in type 2 and 3 patients ages 2–21.
Also, Alyssa Silva’s recent column is timely as it is a popular time of the year for organization. In, “Staying Organized Helps Me Simplify Life With SMA,” she talks about ways she stays organized so when life becomes overwhelming, she doesn’t have to worry about small things like where her cell phone charger is.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 98, host Kevin Schaefer talks with fellow SMA News Today contributors about hiring and managing caregivers. Listen as Kevin talks with DeAnn Runge and Michael Morale about their experiences with home healthcare, and how they find the right people. These panelists also discuss two recent columns from our main website.
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Join the conversation about caregivers here: https://smanewstoday.com/forums/forums/topic/starting-the-search-for-new-caregivers/
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Columns:
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‘Don’t Quit Before the Miracle Happens’ by Sherry Toh - https://smanewstoday.com/columns/2022/01/05/instead-new-years-resolutions-im-making-playlist/
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Sharing Our Stories With the SMA Community’s Next Generation by Halsey Blocher - https://smanewstoday.com/columns/2022/01/07/sharing-our-stories-with-next-generation-sma-community/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discuses how a study in symptomatic SMA children suggests Spinraza also works to return development to these nerve cells, especially if given early.
Also, with a vaccine mandate looming, DeAnn shares how this adds stress to an already difficult situation where retaining caregivers is concerned. She points out that wage restrictions and the nature of the job itself already make finding reliable staff difficult. Adding a vaccine mandate on top of that makes it virtually impossible.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge reads an article about John Gluck, who has a type of muscular dystrophy, portrays versions of Joe's wheelchair-bound son with SMA on the NBC series "Ordinary Joe."
Also, in Kevin Schaefer’s recent article, “Tick, Tick… SMA Adulthood,” he draws parallels between his life and the Netflix original movie, “Tick, Tick… Boom!.” Not only does he relate to losing friends all too soon, but he’s also struggled with balancing ambition and contentment.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how The National Institute for Health and Care Excellence has recommended that Evrysdi be provided at low or no cost to eligible SMA patients in England.
Also, the process of modifying a wheelchair for specific needs is no easy task. DeAnn Runge shares how difficult it’s been for her simply to receive comfortable arm rest pads. Even after replacing them, they’re not what she hoped for. She’s now contemplating what her next action should be.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improved fine manual dexterity in both hands of five children with SMA type 2 over 1.5 years of treatment, a case series shows.
As the new year gets underway it’s a great time to hear what motivates people. In Ari Anderson’s recent column, “The Blessings That Spark My Ambitions for the New Year,” he talks about an opportunity that fell into place and how he’s using that to propel future achievements.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 97, host Kevin Schaefer talks with Ali Ramos (she/her) from Amarillo, Texas. Ali is a licensed social worker and activist, focusing on both the disability and LGBTQ communities. She talks with Kevin about living with SMA, pursuing independence, and her advocacy work.
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Ali’s Instagram: https://www.instagram.com/kittylegs/
Ali’s Facebook page: https://www.facebook.com/aliramostherapy/
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads a news article on how the delays in Spinraza treatment due to the COVID-19 pandemic did not directly result in worsening symptoms in children, a study in Italy says.
Also, after reflecting on 2021, DeAnn shares what her plans are for 2022. Although she doesn’t make resolutions, she’s made goals and explains what they mean to her.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular atrophy.
Also, when you have SMA there are additional aspects to consider when doing things like moving into a new house. Halsey Blocher references some of these challenges in her article, “Giving Thanks for Our New Home.” She talks about how they’ve made the transition easier and steps she’s taken to make her new space feel like home.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SMA patients.
Also, DeAnn Runge shares why December is a bittersweet time of the year. Despite that she’s looking forward to the upcoming year.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how delays of Spinraza treatment due to COVID-19 seem to affect children's function less than weaker family support, small study found.
Plus, togetherness is something Alyssa Silva looks forward to during the holiday season. In her latest SMA News Today column, “Cherishing Togetherness During the Holidays,” she shares some of their family holiday traditions as well as points out why she cherishes them.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients in 2021.
Technology is something DeAnn relies on to live independently. When it isn’t functioning properly it can be a hassle. DeAnn talks about issues she’s having with her internet and what she must do to make it work.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity and treatment response.
Also, Sherry Toh’s SMA News Today article, “As an Adult With SMA, I Need Access to Evrysdi, Too,” pulls at your heartstrings. DeAnn can relate to those feelings as it reminds her of when she was trying to access Spinraza.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. During this conversation, they talk about the nuances of living with SMA, transitioning to adulthood, and advice they have for others in the SMA community.
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Halsey’s column: https://smanewstoday.com/from-where-i-sit-halsey-blocher/
Heather’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/14/31-days-of-sma-heather-halsey-dye/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene therapy Zolgensma.
Also, making meaningful connections has become difficult for DeAnn Runge over the past several years. She explains why that is and shares some of her recent experiences.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy.
Plus, the value of time can be a difficult concept to master. In Ari Anderson’s recent article, “Time Is a Balancing Act, Let’s Learn How to Do It Together,” he talks about the value of time and how he prioritizes his precious time.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patients, caregivers.
Plus, after completing her annual neurology visit and assessments DeAnn talks about why no change is a good thing where SMA is concerned. She gives an update on where she’s at in her treatment journey and talks about her plan going forward.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge discusses how a recent study found that Tranexamic acid effectively reduced blood loss by over 50% during surgery to correct scoliosis due to spinal muscular atrophy.
Also, we all know that self-reflection can be challenging. In Brianna Albers' latest article, she reflects on a reality that requires her to make a change. DeAnn Runge discusses Brianna's column, “To Protect My Emotional Wellness, I’m Letting Myself Take a Break” on this audio news episode.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 95, host Kevin Schaefer talks with the creators of the new song “Spaces.” Done in collaboration with Genentech, this production was created entirely by people from the SMA community.
James Ian is a singer, songwriter, and actor from Los Angeles, California. With Spaces, he wanted to create a song specifically for the disability community.
Dominick Evans is a trans, non-binary creator originally from the Midwest. He has a BFA in Film and is a filmmaker, writer, gamer, streamer, YouTuber, parent, speaker, and activist.
Zack and Zarek Elizondo are brothers, YouTubers, podcasters, and graphic designers. You can learn more about their lives and work on their website, the Sweet Life of Zack and Zarek.
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Link to “Spaces” music video: https://www.youtube.com/watch?v=ZLyRpDn9bTo
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate Price Wooldridge, discusses an article on how spinal deformities and weak trunk muscles put substantial limits on the functional abilities of SMA children and need to be addressed.
Plus, DeAnn Runge knows all too well the downside of the internet. After all her Facebook account was just hijacked. That’s why she wants to share Kevin Schaefer’s recent article "The Human Side of the Internet"; it sheds a positive light on what can be a dark space.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Roche and Genentech will initiate a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 in combination with Evrysdi in children with SMA.
Also, after thinking this Thanksgiving would resemble some normalcy, Covid throws a wrench into DeAnn’s family plans. She explains why their plans have changed and her feelings regarding it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how All Wheels Up recently celebrated the release of a transportation review board study that showed the feasibility of accessible aircraft.
Also, nothing’s ever easy, or so it seems for DeAnn Runge. She talks about the process to get a back door opener replaced and the challenges she faces while waiting for it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how administering Spinraza by subcutaneous intrathecal catheter improved upper limb function in some spinal muscular atrophy patients.
Plus, there are differing opinions on how to refer to a person with a disability. Halsey Blocher's recent column discusses this topic and talks about how there's not one right answer.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 94, host Kevin Schaefer talks with Pamela K. Muhammad from Monroe, Louisiana. Pamela is the author of two books, and she is currently in the process of launching her own fashion accessory business. She talks about living independently with SMA, combatting disability stereotypes, and shares advice for others in the community.
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Pamela’s poetry book: https://www.amazon.com/Pam-Allahs-Poetry-Heart-Collection-Inspires/dp/170241292X/ref=sr_1_1?dchild=1&qid=1635261256&refinements=p_27%3APamela+K.+Muhammad&s=books&sr=1-1&text=Pamela+K.+Muhammad
Pamela’s memoir: https://www.amazon.com/Loving-Skin-Im-Visions-Life/dp/B08HGTSZXT/ref=sr_1_2?dchild=1&qid=1635261337&refinements=p_27%3APamela+K.+Muhammad&s=books&sr=1-2&text=Pamela+K.+Muhammad
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study in China suggests a high prevalence of anxiety and depression among school-age children and adolescents with spinal muscular atrophy.
Also, DeAnn Runge shares the topic of her recent vlog. She talks about the feelings associated with losing abilities and describes how she overcame the obstacles that threatened her hobby.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge discusses how a pilot of newborn screening for spinal muscular atrophy in Liege province became in 3 years a government-run program for Southern Belgium.
Also, Katie Napiwocki's columns always have DeAnn reflecting on her own SMA journey. Today she reads the article, "The Asymmetries of a Physical Therapy Routine and a Koala’s Conquest," where Katie reflects on her past physical therapy, what she's learned from it and how a koala has inspired her. Not only can DeAnn draw parallels, she has a newfound respect for her childhood stuffed koala ironically called Katie.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, shares the story of Ben Lou, an 18-year-old with SMA type 2, mentally as strong as they come: accepted to three top US universities, and that is now attending MIT.
Plus, DeAnn talks about making her world more accessible even if that means inconveniencing others. Giving some examples she demonstrates the conflicting feelings she faces.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for air travel.
Plus, Alyssa Silva's recent column hits close to home for DeAnn. She shares her article that talks about how overwhelming SMA medical issues can be and encourages listeners to continue the discussion over on SMA News Today forums.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to a son with SMA type II. He talks with Kevin about the origins of the show and its disability representation, his family life, and the importance of seeing disabled characters on screen.
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Watch Ordinary Joe: https://www.nbc.com/ordinary-joe
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how a Canadian agency found evidence lacking to support gene therapy reimbursement in older babies and toddlers with spinal muscular atrophy.
Plus, DeAnn Runge talks about how sometimes being inundated with all things SMA gets to be too much for her. Today she's talking about a topic totally unrelated to SMA to take her mind off it for a brief moment. She's looking for creative input for a project she has in the works.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients unable to walk by year's end.
Also DeAnn Runge gives an update on the latest happenings over on the forums. Relevant topics like the vaccines, the latest cell phones and accessibility apps are being discussed as well as the new TV show Ordinary Joe. Finding caregivers, dietary issues and October being National Disability Employment Awareness Month are also at the forefront of conversation.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a news article on how blood levels of phosphorylated neurofilament heavy chain, nerve cell damage marker, are related to greater motor gains in SMA infants, children.
Also, as treatments emerge, the SMA type system is evolving. DeAnn Runge talks about what she feels are the faults with the system. She also discusses how she'd like to see it change.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the SMA News Today article, “New Quality of Life Survey Aims to Help Inform SMA Community Needs”.
Also, over on the forums there was just a conversation talking about situations that could’ve ended badly. Ari Anderson’s timely column, “Learning to Laugh and Heal After Facing Danger,” points out a lighthearted approach can be much needed after situations like these.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 92, host Kevin Schaefer talks with fellow SMA News Today contributors to discuss each other’s work experiences. October is recognized in the United States as National Disability Employment Awareness Month (NDEAM).
Listen as Kevin talks with DeAnn Runge, Michael Morale, and Alyssa Silva about the nuances of working with a disability, finding jobs, and maintaining disability benefits while working.
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Join the conversation about NDEAM here: https://smanewstoday.com/forums/forums/topic/ndeam-what-was-your-first-job/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads an article on how pre-symptomatic infants with SMA have retained the ability to swallow after being treated with Evrysdi for at least one year in a clinical trial.
Also, October is National Disability Employment Awareness Month (NDEAM.) As such it got DeAnn thinking about one of her first jobs and how she obtained it. Employment opportunities are out there and by thinking outside the box, seeking a little guidance if need be and pursuing your passions it might just be a bit easier finding suitable work.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) children not helped by Zolgensma, are being enrolled in the Spinraza RESPOND trial.
Plus, usually Kevin Schaefer reads his own columns, but today DeAnn Runge has the opportunity to share his latest column. Titled, “Embracing a New Chapter in Life With SMA,” Kevin writes about his longtime caregiver leaving and all the emotions surrounding it, of course putting his unique spin on it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how low bone density puts Spinal Muscular Atrophy (SMA) children in China at risk for fractures.
Plus, DeAnn Runge talks about one of her favorite hobbies. She shares what made it possible for her to accomplish it in the first place. Because of unforeseen circumstances along with her disability progression she’s contemplating giving it up.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how certain abilities decline in Spinal Muscular Atrophy (SMA) children who are unable to walk. In a world that can be less than accessible it’s only natural to gravitate towards something that provides some semblance of inclusion. Read by DeAnn Runge, Sherry Toh’s recent column, “The Possibility of Radical Accessibility Is Here, as Told Through Lego and Gaming,” explores this. Her experience with gaming allows her to find accessibility in unexpected places. In her words, “Accessibility is everywhere around us, even in the places we don’t think to look.”
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, working on projects for NASA. He has SMA Type II and is passionate about helping disabled individuals find employment.
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Blake’s website: https://blakewatson.com
Blake’s Twitter: @blakewatson
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a trial planned of Spinraza at high dose in Spinal Muscular Atrophy (SMA) patients who have used Evrysdi. Read the news article: https://smanewstoday.com/news-posts/2021/09/17/high-dose-spinraza-trial-sma-patients-using-evrysdi/
DeAnn Runge doesn’t shy away from personal topics especially when she feels others can relate or offer advice. One of the added challenges, when you have a disability, is dealing with your period. She talks about how she manages it, but also discusses why she’s looking for alternative options.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how blood neurofilament light chain (NfL) levels may mark Spinal Muscular Atrophy (SMA) severity and therapy efficacy.
Although she finds travel difficult for herself, DeAnn Runge loves to hear about others adventures. Today she reads Halsey Blocher’s column, “Vacationing With SMA as Your Travel Companion,” where she shares about her family trip to Florida and tips to make the journey as easy as it can be.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a variant of an androgen receptor protein which may be useful in treating Spinal and Bulbar Muscular Atrophy (SBMA).
Also, on what could possibly be the last nice day of the season, DeAnn Runge heads out on an adventure with her mom. She talks about what aspects were fun and also some challenges they faced throughout the day.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge reads Alyssa Silva’s latest column where she shares about a positive interaction with a child. Odds are that if you’re in a wheelchair you’ve been stared at, or even shied away from. It can be frustrating to say the least. Alyssa has a technique that engages children in conversation to foster acceptance regarding disability.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 90, host Kevin Schaefer talks with Judy Heumann, who’s originally from Brooklyn, New York. A pioneer of the disability rights movement, she is one of the primary subjects of the 2020 Netflix documentary Crip Camp. In the United States, she served in the administrations of Presidents Bill Clinton and Barack Obama.
In 2020, she published her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.
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Judy’s book: https://www.amazon.com/Being-Heumann-Unrepentant-Disability-Activist/dp/0807019291
Judy’s Instagram: https://www.instagram.com/theheumannperspective/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene.
Plus, DeAnn Runge talks about a topic that’s keeping her up at night. She’s concerned she could lose 75% of her caregivers. She also shares about her next vlog regarding her views on SMA treatment effectiveness.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how, according to a mouse model, two SMN 2 targeting therapies work better than one.
Also, heading into the weekend, DeAnn Runge wanted to share Brianna Albers’ latest column, “Today and Every Day, I Choose Rest.”
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses indigenous groups in Canada having the highest rate of spinal and bulbar muscular atrophy (SBMA) in the world.
DeAnn Runge talks about how a recent news story regarding the Miami International Airport installing wheelchair charging stations got under her skin. She points out how difficult air travel is for the disabled community. Not only does one risk injury to themselves but also damage to their wheelchairs when they travel by plane. She feels the industry needs to address the issue of restrictive air travel.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how mothers of Spinal Muscular Atrophy (SMA) children and adolescents what to improve their children’s quality of life.
DeAnn Runge reads a column by Alyssa Silva that she relates to on many levels. It’s titled, “The Challenges of Making Friends as an Adult With SMA.”
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 89, host Kevin Schaefer talks with Carole St-Laurent from Quebec, Rimouski. Carole is the author of multiple children’s books, for which she writes under the name Rainbow Gal. She talks about her artistic career and past life as a musician, living with SMA, and her experiences with traveling and living independently.
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Carole’s website: http://Rainbowgal.com
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how $1 million has been raised by a Spinal Muscular Atrophy (SMA) patient for a disabled gamers project.
Also, DeAnn Runge talks about her latest Dose of DeAnn vlog where she reveals her Jaco Robotic Arm. She shows you what the installation process is like, and what she can do with it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how some Spinal Muscular Atrophy (SMA) patients unable to walk unassisted may have trouble chewing.
And to close out SMA Awareness Month, DeAnn Runge shares the final few stories from the 31 Days of SMA campaign. She goes on to remind everyone that just because the month is over it doesn’t mean SMA goes away. Continue sharing stories and advocating to make the world a better place.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
InstagramLive here: https://www.instagram.com/tv/CTBDgwbBFm5/
Ally Macgregor chats with Kevin Schaefer (@kevinschaefer19), Katie Napiwocki (@wheelprintsalongthewildflowers) and Samantha Przybylski (@smasammysue) about the 31 Days of SMA campaign, personal storytelling and disability advocacy.
You can watch this conversation again, here. Also, don't forget to check us out and follow us on social media:
Facebook - https://www.facebook.com/smanewstoday Twitter - https://twitter.com/smanewstoday Instagram - https://www.instagram.com/smanewstoday
SMA News Today’s multimedia associate, Price Wooldridge, discusses an SMA UK network which helps patients navigate adulthood, living longer, attending college, pursuing careers, and traveling more.
Also, having what she considers a significant disability DeAnn Runge finds life in general can be little daunting. That's why she goes by her motto, focus on what you can do not on what you can't. She explains how she applies this motto in her life.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Japan and it’s support by most parents surveyed.
Plus, not only does the 31 Days of SMA campaign highlight some amazing people, it also sheds light on what needs to change in our communities. Acceptance, attitude and overcoming obstacles are also themes that run throughout the stories.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) Type 1 affects sensory nerves as children age.
Plus, Kevin Schaefer reads a column by Ari Anderson about being thankful instead of being envious.
Link to Ari’s column: https://smanewstoday.com/columns/2021/08/19/learning-be-thankful-instead-envious/
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the best possible outcome for infants with Spinal Muscular Atrophy (SMA) is newborn screening, then Zolgensma, according to a cost-effectiveness study in Australia
Also, content creator DeAnn Runge talks about getting her Jaco Robotic arm. She shares her concerns and the adjustments she’s had to make after receiving it. Despite that she says it’s worth the effort.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the gene therapy Zolgensma helps improve mobility in young children with Spinal Muscular Atrophy (SMA) in a real-world study.
Also, as August is beyond half over several stories have been featured in the 31 Days of SMA campaign. Here are a handful of the most recent ones.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA lifting its partial hold on clinical trials of Intrathecal OAV-101 for the treatment of Spinal Muscular Atrophy (SMA).
Also, forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Tristram Peters, is about self-acceptance and rejecting ableism.
Link to 31 Days of SMA series: https://smanewstoday.com/category/31-days-of-sma/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 88, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and Katie Napiwocki. They discuss this year’s 31 Days of SMA campaign, as well as other topics and news stories related to SMA Awareness Month. Finally, they highlight some recent columns from our main website.
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Links to 31 Days of SMA campaign and news stories:
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31 Days of SMA stories: https://smanewstoday.com/31-days-of-sma/
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MDA Launches New Podcast Hosted by SMA Advocate: https://smanewstoday.com/news-posts/2021/08/10/mda-new-podcast-host-sma-advocate-mindy-henderson/
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Advocates Lobby US Congress During Virtual Rare Disease Week: https://smanewstoday.com/news-posts/2021/08/03/advocates-lobby-us-congress-during-virtual-rare-disease-week-2021/
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Links to columns:
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”Inviting People to Sit at the Table of My Disabled Life” by Katie Napiwocki: https://smanewstoday.com/columns/2021/07/22/relationships-inviting-people-sit-table-disabled-life/
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”A Plea for Singapore to Approve SMA Treatments” by Sherry Toh: https://smanewstoday.com/columns/2021/08/04/plea-singapore-approve-sma-treatments/
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”SMA Pride and Disability Language” by Kevin Schaefer: https://smanewstoday.com/columns/2021/08/10/sma-pride-disability-language/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Zolgensma-Evrysdi combination is likely beneficial for patients with Spinal Muscular Atrophy (SMA) Type 1.
Also, DeAnn Runge shares about the stress and anxiety that come along with verifying disability eligibility.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Katie Napiwocki, A Wildflower in the Wheelderness, “Inviting People to Sit at the Table of My Disabled Life”.
Also, as the 31 Days of SMA continues SMA News Today has featured some fabulous stories with more to come. DeAnn shares a brief synopsis of some of the most recent featured contributions.
Are you interested in learning more about multiple sclerosis? If so, please visit https://multiplesclerosisnewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the award of funds by Muscular Dystrophy Canada for Spinal Muscular Atrophy (SMA) newborn screening.
Also, Kevin Schaefer reads a column about the concept of SMA Pride and disability language.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses improved lung function with Spinraza in a Spinal Muscular Atrophy (SMA) Type 2 child.
Also, As DeAnn Runge awaits the arrival of her Jaco Robotic Arm she’s doing some last minute cleaning. She even found a way to personalize her chair.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup at a Time, “Why My Journey With Disability Pride Isn’t Linear”.
Also, in recognition of SMA Awareness Month, SMA News Today features the wonderful initiative called 31 Days of SMA. Each day in August a story is featured of someone whose life has been touched by SMA. DeAnn Runge gives a brief synopsis of what’s been covered thus far.
Are you interested in learning more about SMA? If so, please visit https://smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis stopping work on the development of Branaplam as an oral treatment for Spinal Muscular Atrophy (SMA).
Forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Alvaro Cheherlian, is about being an entrepreneur with SMA.
Link to 31 Days of SMA series: https://smanewstoday.com/category/31-days-of-sma/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 87, host Kevin Schaefer talks with Allie Williams from Stillwater, Oklahoma. Allie is a vocal coach and she has SMA Type II. She talks about her lifelong musical journey, dealing with accessibility issues as a college student, and advice she has for others with SMA.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses early work that supports Apitegromab’s safety as a Spinal Muscular Atrophy (SMA) therapy.
Also, after a yearlong battle DeAnn Runge learns she’s been approved to receive the Jaco Robotic Arm. She reflects on the process and shares the emotions that come along with it.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses SadBaby, an organization raising donations to support children with Spinal Muscular Atrophy (SMA).
Also, SMA News Today content creator DeAnn Runge gives a snapshot of the columnists at SMA News Today and their recent contributions. Topics range from relationships with others to the relationship with ones SMA body. Accessibility, Disability Pride and how success should be viewed are all among subjects discussed in the latest columns.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a partnership which aims to lower out-of-pocket costs for rare disease medications.
Also, Forums Director Kevin Schaefer reads a column by Sherry Toh about her love for video games.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a wearable cybernetic leg significantly improves walking ability for people with neuromuscular disabilities such as Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge shares stories that could be considered inspiration porn although she views them as inspirational because they serve a purpose.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics. In the forums there are a lot of great discussions going on. A topic creating a lot of buzz is the SSI Restoration Act of 2021. July being Disability Pride month is another topic with a lot of interest. Other topics include disability portrayed in media, what the line is between inspirational and inspiration porn and Spinraza injection day woes. There are also members in various stages of pursuing a Jaco robotic arm.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Visit the SMA forums https://smanewstoday.com/forums/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a COVID-19 infection turns severe in a Spinal Muscular Atrophy (SMA) Type 1 child. News article: https://smanewstoday.com/news-posts/2021/07/14/covid-19-severe-fatal-inflammation-sma-type-1-child/
Forums Director Kevin Schaefer reads a column by Ari Anderson about treating your body right. Link to Ari’s column: https://smanewstoday.com/columns/2021/07/15/building-healthy-relationship-your-body/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 86, host Kevin Schaefer talks with Price Wooldridge from Fort Worth, Texas. Price is a voiceover contributor for the SMA News Today flash briefings, and he lives with a rare autoimmune disease called Lambert-Eaton Myasthenic Syndrome. Price discusses his background and diagnosis story, the commonalities and differences between SMA and LEMS, and his advice for others living with rare diseases.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) treatment may be more effective by altering an underlying molecule.
DeAnn Runge shares what having a service dog entails. She just completed her Public Access Recertification and details how it was different from years past.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in Spinal Muscular Atrophy (SMA) Type 3 children.
In recognition of Disability Pride Month, DeAnn Runge reads the column ‘All of Us Will Become Disabled and Sick’ by Brianna Albers.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a stem cell therapy which may benefit some Spinal Muscular Atrophy (SMA) Type 1 infants.
Also, Kevin Schaefer shares his thoughts on Disability Pride Month.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the UK SMA Newborn Screening Alliance calling on people to take action and sign a petition requesting Spinal Muscular Atrophy (SMA) be added to newborn screening.
Also, DeAnn Runge talks about their recent van troubles and the extra complexity disability adds to the situation.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how many U.S. pediatricians fail to use developmental screening tools in diagnosing Spinal Muscular Atrophy (SMA).
Plus, DeAnn Runge shares a recent article by Halsey Blocher, “The Evolution of Adult Programs at the Cure SMA Conference.” Halsey reminisces on past conferences and talks about how and why the programs have evolved over the years.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Texas adding Spinal Muscular Atrophy (SMA) to its newborn screening program.
Also, Forums Director Kevin Schaefer reads a column about making churches more accessible.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 85, host Kevin Schaefer talks with Mikey and Noelle Hazel from Union, New Jersey. Mikey and Noelle are siblings who both have SMA Type II. They talk about growing up with SMA together, combating ableism, and entering a new chapter in their lives.
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Link to Mikey’s YouTube Channel: https://www.youtube.com/channel/UCNx-ePIR4bO2tPKCSfPb9fQ
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses Japan’s approval of Evrysdi as the first at-home, oral Spinal Muscular Atrophy (SMA) treatment.
Also, DeAnn Runge talks about her quest to start pool therapy and the challenges she’s faced with. It’s just not as easy as dipping your toe in the water.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma treatment demonstrating major milestones being met in infants with Spinal Muscular Atrophy (SMA).
Also, DeAnn shares with you Alyssa’s latest column, “Actually, My Disease Does Define Me,” where she talks about the influence SMA has had on her life.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Massachusetts being seen as highly accurate and effective.
Forums Director Kevin Schaefer reads a column by Ari Anderson about stepping outside his comfort zone to ask for extra help.
Link to Ari’s column: https://smanewstoday.com/columns/2021/06/24/asking-for-help-new-highs/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses children with Spinal Muscular Atrophy (SMA) taking Spinraza, leanding to better swallowing and farther walking.
Also, not only are the forums a great place to learn, they’re a fabulous place to share where members can really relate to each other in a unique way. New categories have been added that emphasize that fact. Weekly Wins is a space to share weekly highlights and generally positive things. Would You Rather is new as well. In this forum there will be questions where you have to choose between two hypothetical situations. One of the biggest topics recently in the general forum is caregivers. Specifically how challenging it is to find them right now.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses meaningful improvements in motor abilities evident with apitegromab treatment in later-onset Spinal Muscular Atrophy (SMA) patients.
Also, DeAnn Runge shares her adventure picking honeyberries and the challenges she faced.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi being linked to motor function improvements in a broad range of people with Spinal Muscular Atrophy (SMA).
Also, Forums Director Kevin Schaefer reads a column about finding community support through this year’s Cure SMA virtual conference.
Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding a Spinal Muscular Atrophy (SMA) newborn screening program in North Carolina.
Also, DeAnn Runge shares, Halsey Blocher’s latest column, “Finding a Bit of Myself in Truman Burbank,” where she draws parallels between her life and the movie The Truman Show.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses NICE issuing its final Zolgensma appraisal for eligible Spinal Muscular Atrophy (SMA) patients.
For the second time the Cure SMA conference was held virtually. DeAnn Runge talks about what she gained from the conference. She also talks about her latest YouTube video that shows what’s inside a care package from Cure SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “Navigating the Past Year Without Caregivers Has Been Challenging”.
Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about the power of saying yes.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 84, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss some topics from the 2021 virtual Cure SMA conference and general news updates. The team also talks about restrictions being lifted across the U.S. and the impact of this on the SMA community. Finally, they highlight some recent columns from our main website.
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Links to news stories and forum topics:
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Apitegromab Put on FDA’s Fast Track https://smanewstoday.com/news-posts/2021/05/26/muscle-directed-therapy-apitegromab-put-on-fda-fast-track/
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SMA Added to North Carolina’s Newborn Screening Program https://smanewstoday.com/news-posts/2021/06/09/sma-added-north-carolina-newborn-screening-program/
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Discussion on the film "Sound of Metal" https://smanewstoday.com/forums/forums/topic/have-you-watched-sound-of-metal/
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Links to columns:
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”Embracing the Growing Pains of New Wheels” by Katie Napiwocki https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/
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”I’m Taking My Time Returning to Normal” by Brianna Albers https://smanewstoday.com/columns/2021/06/07/taking-my-time-returning-normal/
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”I Don’t Want a World Without SMA. Here’s Why.’” by Sherry Toh https://smanewstoday.com/columns/2021/06/09/gene-editing-world-without-sma/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s NICE recommending against adding Evrysdi to the UK’s Public Health System.
Also, DeAnn Runge reads Katie Napiwocki’s recent column, “Embracing the Growing Pains of New Wheels.” From the hesitancy to start the process to finding ways to adjust once the transition happens DeAnn can relate to it all.
Read Katie's column here: https://smanewstoday.com/columns/2021/06/03/new-power-wheelchair-embracing-growing-pains/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “SMA and Sibling Relationships: My Brother’s Perspective”.
Also, DeAnn Runge talks about how she came to the decision to stick with Evrysdi. It was a difficult decision but she’s happy with her choice.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Asuragen’s lab test which can speed up diagnosis of SMA carriers and patients.
Also, Forums Director Kevin Schaefer reads a column from Alyssa Silva about reflecting on her diagnosis day.
You can read Alyssa’s column here: https://smanewstoday.com/columns/2021/04/30/reflecting-diagnosis-day-30-years-later/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a stress-induced protein may serve as a new Spinal Muscular Atrophy (SMA) biomarker in infants.
Also, SMA News today brings a variety of the most up to date content that relates to the SMA community. Between columnists, social media platforms, news and research all aspects of SMA life are covered.
To help continue bringing relevant content please take the survey: https://bionews.sjc1.qualtrics.com/jfe/form/SV_aY8P54qxfvCLPgi
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab being granted a fast track designation by the U.S. Food and Drug Administration.
DeAnn Runge talks about her upcoming appointment with her neurologist to discuss continuing with Evrysdi or switching back to Spinraza. She dreads making the wrong decision.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the SMN2 copy number and a rare genetic variant influence the severity of Spinal Muscular Atrophy (SMA).
Also, Forums Director Kevin Schaefer reads a column about embracing the outdoors and venturing into the unknown.
Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 83, host Kevin Schaefer talks with Christine Getman and Scottie Foertmeyer from Portland, Oregon. Christine and Scottie are partners in life and in business, as they run the nonprofit Magic Wheelchair together. They talk about their relationship, advocacy work, and daily living.
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Link to Magic Wheelchair: https://www.magicwheelchair.org/
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy may carry a higher risk of fluid buildup in the brain.
Also, DeAnn Runge shares her reflections on Memorial Day by summarizing Brianna Albers recent column, "Naming Disability as a Space of Possibility". She also remembers her little brother who was an SMA warrior.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Apitegromab safely counters a muscle growth suppressor in patients with Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge has mixed feelings on the rebranding of the organization she received her service dog through after they removed the symbol of a wheelchair from their logo.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses free tools being offered by Cure SMA to boost the independence of Spinal Muscular Atrophy (SMA) patients.
Also, Forums Director Kevin Schaefer reads a column about the realities of living with SMA and managing fatigue.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup At a Time, “I’m Remembering to Prioritize My Mental Health”.
DeAnn Runge talks about the hot topics going on right now in the forums. The SMA version of Would You Rather is quite thought provoking. Another topic posted by one of our forum members regarding self-esteem has had a big response. Other topics include post vaccination plans, mental health and summer reading selections.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how neurofilaments may not be a biomarker for older patients with Spinal Muscular Atrophy (SMA) Type 1.
Also, DeAnn Runge discusses the new CDC mask recommendations and her feelings associated with them.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses adding thrombotic microangiopathy (TMA) to the list of safety concerns for Zolgensma.
Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about opening doors for new friendships and connections.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 82, host Kevin Schaefer talks with Hawken Miller from Newport Beach, California. Hawken is a features writer for SMA News Today’s parent company, BioNews, as well as a columnist for Muscular Dystrophy News Today. He discusses growing up with Duchenne MD, the evolution of his journalism career, and learning about the SMA community.
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Link to Hawken’s column: https://musculardystrophynews.com/category/hawks-eye-view-a-column-by-hawken-miller/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how sex, and the number of copies of the SMN 2 gene influence age of onset for Spinal Muscular Atrophy Type 3 patients.
Also, DeAnn Runge shares Katie Napiwocki’s recent column, Keeping the ‘Wild Green Thorns’ of Advocacy Fatigue at Bay. Katie has an eloquent way of describing some of the struggles those with disabilities go through and the feelings that arise from those situations.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA) Type 3 patients.
Also, DeAnn Runge talks about how disappointed she is that her appeal for the Jaco Robotic Arm was denied and how she’s not giving up.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes.
Also, Forums Director Kevin Schaefer reads a column about managing chaos when his caregiver’s car caught on fire.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA).
Also, on the forums a fun game of SMA Would You Rather is going on. Every couple of weeks a question is posted to the SMA community. Questions range from temperature preference to caregiver attributes. Other forum topics include blocking out childhood trauma, the Jaco Robotic Arm process and coping mechanisms.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma.
Also, DeAnn Runge shares a recent adventure she went on to a greenhouse in the country. She even talks about how she was caught off guard and how she handled the situation.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy.
Also, Kevin Schaefer reads a column about staying true to himself and working in management.
Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, and his upcoming young adult novel.
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Link to Chaz’s YouTube channel: https://www.youtube.com/channel/UCwPeqLbJO9s2v9UDrdbzbnQ
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Music Credits: Alec's Band A Young Griffin Boyle In Drag
================================
To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants.
Also, DeAnn Runge reads an article that really struck a chord with her. Halsey’s latest column, "It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes", dives into the unfavorable stigmatism that surrounds trachs and how that negatively impacts the disabled community.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge reviews the Oscar nominated film "The Sound of Metal". The plot of which features the drummer of a heavy metal band who suddenly loses his hearing. DeAnn draws several parallels to this film in regards to her own disability.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients.
Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about his friendship with a North Carolina senator.
Link to Ari’s column: https://smanewstoday.com/columns/2021/04/22/importance-people-recognize-my-worth-senator-thom-tillis/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children.
Also, SMA News Today content creator DeAnn Runge focuses on a couple columns that struck a chord with her. Brianna’s latest column, "The Green-eyed Elephant in the Room", talks about something she’s had to contend with her whole life: jealously. Perceptions are a subject Alyssa tackles in her column, "Why My Teacher and I Faked My Detention in Middle School" - both give great insight regarding these issues.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments.
Also, DeAnn Runge shares how she turned around a frustrating situation into success all while keeping her cat entertained.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA).
Forums Director Kevin Schaefer reads a column about his wheelchair malfunctioning and how he handled the situation.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news stories and forum topics. Finally, they highlight some recent columns from our main website.
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Links to news stories and forum topics:
-Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds: https://smanewstoday.com/news-posts/2021/03/30/rare-diseases-cost-us-nearly-1-trillion-economic-burden-2019-everylife-foundation-study/
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Apitegromab Over 1 Year Bolsters Motor Abilities of Types 2 and 3: TOPAZ Trial: https://smanewstoday.com/news-posts/2021/04/09/top-line-topaz-trial-data-support-apitegromab-muscle-targeted-scholar-rock-therapy/
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Sleep solutions: https://smanewstoday.com/forums/forums/topic/sleep-solutions-2/
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Trying to keep expectations in check: https://smanewstoday.com/forums/forums/topic/trying-to-keep-expectations-in-check/
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Links to columns:
-”Why I Never Had a Spinal Fusion: A Retrospective, 10 Years Later” by Sherry Toh: https://smanewstoday.com/columns/2021/04/14/spinal-fusion-retrospective-10-years-later/
-”An SMA Patient and a Pulmonologist Comment on the COVID-19 Vaccine” by Halsey Blocher: https://smanewstoday.com/columns/2021/03/26/covid-19-vaccine-comments-sma-patient-pulmonologist/
-”How to Build and Maintain a Network of ‘Masked Advocates’” by Ari Anderson: https://smanewstoday.com/columns/2021/03/25/building-maintain-network-masked-advocates/
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Music Credits: Alec's Band A Young Griffin Boyle In Drag
================================
To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge talks about the latest topics being discussed on the forums. As allergy season is ramping up ways to combat the symptoms are an all-important area of conversation. Sleep solutions from Melatonin to pillow combinations and even a lift bed have been highlighted as well. Starting Evrysdi is causing columnist Brianna Albers to reflect on the generations of SMAers that came before her.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA).
Also, throughout her lifetime DeAnn Runge has had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In her latest Dose of DeAnn vlog she shows a glimpse of all three and talks about making her decision.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA).
Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA).
Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages.
After watching a YouTube video where a wife and another friend help a gentleman with quadriplegia into a hot tub, DeAnn Runge talks about the struggles of certain activities and questions if they’re worth the effort.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college, and advocating for others with disabilities.
Note: Ainaa does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a range of voices. It is our responsibility to highlight the diversity within the SMA community.
You can find the transcript of this conversation here: http://bit.ly/SMA-Podcast79-Transcript
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Link to Ainaa’s Instagram: https://www.instagram.com/ainaafrhanah/tagged/
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Music Credits: Alec's Band A Young Griffin Boyle In Drag
================================
To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA).
Also, Kevin Schaefer talks about returning to movie theaters after receiving the COVID-19 vaccine.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma helped pre-symptomatic babies with Spinal Muscular Atrophy (SMA) achieve age-appropriate motor milestones.
Instagram is a fantastic way to connect with the SMA community. Kevin Schaefer has been host for live conversations with Dr. Danielle Sheypuk and Alyssa Silva who talked about a wide range of topics. Upcoming guests include Angela and Justin Titcombe and Hugo Travino. The forums serve as another great way to connect with the community as do the columns.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgenzma continues to prevent motor function decline for five years for patients with Spinal Muscular Atrophy (SMA).
Also, SMA News Today content creator DeAnn Runge talks about how justifying our needs has become second nature. She discusses how she’s appealing a denial for the Jaco Robotic Arm as well as other hoops she has to jump through to remain living her life.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi leads to longer-term benefits for Spinal Muscular Atrophy (SMA) patients, Types 2 and 3.
Forums Director Kevin Schaefer talks about disability representation in the movie “Zack Snyder’s Justice League.”
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being found safe and effective in Spinal Muscular Atrophy (SMA) toddlers.
Also, DeAnn Runge welcomes new listeners and forum members as she points out the forums are a supportive and informative community. Vaccine discussions continue as vaccination site crowd size becomes concerning. The importance of schedules and routines are a topic of conversation as well as a wheelchair feature wish list.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how treatment with Evrysdi is safe in Spinal Muscular Atrophy (SMA) patients previously given other therapies.
DeAnn Runge talks about how much technology has evolved in her lifetime. From cassette tapes to digital music she discusses how the advancements have enhanced her life.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA Foundation and PTC Therapeutics joint efforts to fund regenerative medicine research.
Also, Forums Director Kevin Schaefer shares his perspective on getting the COVID-19 vaccine. Also, he discusses an Instagram live series he’s hosting on the topic of relationships and SMA.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the therapy, Reldesemtiv, aids motor and respiratory strength in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Also, with vaccinations ramping up across the country daydreaming is a popular trend on the forums. Post vaccination activities top the list. Recent articles by SMA News Today columnists are always of interest as well.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being added to the list of eligible medications for Spinal Muscular Atrophy (SMA) Type 1 patients in England and Scotland.
Also, despite a global pandemic complicating the process DeAnn Runge received her new wheelchair in record time. She did have to make compromises though and talks about getting used to going from rear-wheel drive to front wheel drive.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how adults with Spinal Muscular Atrophy (SMA) usually don’t experience weakness or impairment of eye muscles.
Forums Director Kevin Schaefer reads a column by Ari Anderson about pursuing a team of advocates.
Link to Ari’s column: https://smanewstoday.com/columns/2021/03/11/knocking-on-doors-searching-for-advocates/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, and other news stories. Finally, they highlight some recent columns from our main website.
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Links to news stories:
-Cure SMA offering free virtual therapy sessions https://smanewstoday.com/news-posts/2021/02/24/cure-sma-free-virtual-therapy-sessions/
-Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland https://smanewstoday.com/news-posts/2021/03/10/zolgensma-available-certain-sma-type-1-patients-england-scotland/
-New SMN-boosting Molecule Shows Promise as Add-on Therapy https://smanewstoday.com/news-posts/2021/02/17/new-smn-protein-boosting-molecule-shows-promise-add-on-sma-therapy-study-patient-derived-cells/
-Rare Disease “Patient Hero” Raises Awareness Through Fashion https://smanewstoday.com/news-posts/2021/02/25/tristan-lee-rare-disease-day-patient-hero-raises-awareness-fashion-modeling/
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Links to columns:
-”Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability” by Sherry Toh - https://smanewstoday.com/columns/2021/03/03/sma-patients-adaptability-amazing/
-”Hot Air Balloons Adrift: Appreciating My Pulmonary Function With SMA” by Katie Napiwocki - https://smanewstoday.com/columns/2021/03/04/appreciating-pulmonary-function-hot-air-balloons-adrift/
-”Amid the Busyness of Life With SMA, I’m Learning to Embrace Stillness” by Kevin Schaefer - https://smanewstoday.com/columns/2021/03/09/embracing-stillness-amid-busy-life-sma/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the challenges of life as a teen and young adult with Spinal Muscular Atrophy (SMA).
Also, SMA News Today content creator DeAnn Runge shares the latest column by Brianna Albers. It goes into detail on why she’s being denied treatment and her feelings regarding the process.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (SMA) treatment.
DeAnn Runge talks about her hesitancy to meet with a dietician to discuss GI issues she’s been dealing with.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1.
Forums Director Kevin Schaefer talks about managing his mental health and embracing the stillness.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA).
Also, a variety of topics are being talked about on the SMA News Today forums because of the diverse community that not only includes those who have SMA but parents and caregivers as well. Recent conversations include van conversions, surgery with limited lung capacity, touchless thermometers and even iPhone accessibility features.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood.
Also, DeAnn Runge talks about how she’s struggling to personalize her new chair. Right now she feels like it’s just another piece of equipment, but would like ideas on how to make it more unique to her.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children.
Forums Director Kevin Schaefer reads a column by Ari Anderson about what it means to be rare.
Link to Ari’s column: https://smanewstoday.com/columns/2021/02/25/rare-diseases-flying-under-radar/
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, his personal life, and his mantra of surrendering to the situation.
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Link to Asher’s Facebook page: https://www.facebook.com/asherlennonlionsmajourney
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA).
Also, Rare Disease Day is a day to recognize lives touched by rare diseases such as SMA. Discussions in the forums have revolved around this subject as have columns and even the latest Dose of DeAnn vlog where she interviews Dan and Viola who have their own YouTube channel, The Ginchiest.
Links: https://smanewstoday.com/columns/2021/02/23/rare-disease-day-grateful-for-friends/
https://smanewstoday.com/columns/2021/02/18/rare-disease-traveler-finds-her-village/
The Ginchiest Interview: https://youtu.be/NOEa2nEoPT4
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy.
Balancing mind and body can be tricky. DeAnn Runge shares her struggles with accepting her limitations as it pertains to purchasing products she can use.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses assistive devices which should be standard in managing Spinal Muscular Atrophy (SMA) Type 1.
Forums Director Kevin Schaefer talks about the close friends in his life, and how these relationships connect to his place in the rare disease community.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses quantitative MRI imaging showing itself to be a sensitive measure of decline in young adults with Spinal Muscular Atrophy (SMA).
Now that various treatments are available for SMA, it can be easy to forget that many individuals are starting treatment for the very first time. Alyssa Silva’s latest column details her feelings as others start their journeys. SMA News Today content creator DeAnn Runge reads, “My Hopes and Fears Resurface When Others Start SMA Treatment”.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in the case of a teenager with late-onset Spinal Muscular Atrophy (SMA).
SMA News Today content creator DeAnn Runge shares a discussion she had regarding accessibility. Despite having come a long way where accessibility is concerned not everyone feels it’s worthwhile.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a “miracle” when Spinraza gives a boy, now 5 years old, a chance to grow up fast and show good progress.
Also, forums Director Kevin Schaefer reads a column by Ari Anderson about being a pioneer with SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 76, host Kevin Schaefer talks with fellow SMA News Today contributor DeAnn Runge. They discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s treatment, and an upcoming career webinar series from Cure SMA.
Kevin and DeAnn also discuss mental and emotional health amid the pandemic, as well as access to the COVID-19 vaccine. Finally, they highlight some recent columns from our main website.
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Links to news stories:
-https://smanewstoday.com/news-posts/2021/01/06/higher-dose-spinraza-trial-now-enrolling-part-b-after-no-safety-issues-found-in-part-a/
-https://smanewstoday.com/news-posts/2021/01/18/scholar-rock-topaz-apitegromab-trial-top-line-data-due-june-2021/
-https://smanewstoday.com/news-posts/2021/01/29/cure-sma-career-webinars-series/
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Links to columns:
-https://smanewstoday.com/columns/2021/01/22/wandering-lines-journey-unknown/
-https://smanewstoday.com/columns/2021/01/14/soaring-with-hope-welcome-aboard/
-https://smanewstoday.com/columns/2021/02/01/journey-internalized-ableism-belonging/
To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the EMBRACE Trial which supports Spinraza’s benefits in a broad range of Spinal Muscular Atrophy (SMA) patients.
Also, DeAnn Runge welcomes new SMA News Today columnist, Sherry Toh, by reading her debut article, "Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown".
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the National Organization for Rare Disorders (NORD) 6th “state report card”, noting progress, but raising concerns.
Plus, closing in on a year after the global pandemic emerged DeAnn Runge shares her thoughts on receiving one of the first vaccines available. She also points out seeing societies inequities during vaccine distribution.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses rare disease groups and pharmaceutical companies, joining SMA Europe in a push for newborn screening for Spinal Muscular Atrophy (SMA).
Forums Director Kevin Schaefer shares his thoughts on “Disability Visibility,” a collection of first-person essays from a wide range of disabled authors.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses improvement in motor function, breathing, and ease of administration are important factors when Spinal Muscular Atrophy (SMA) patients and caregivers decide on treatment options.
Plus, recent conversations in the SMA News Today forums include the efficacy of the new vaccines in combination with some SMA treatments. Also what to expect when starting Evrysdi and managing any side effects. Recent podcasts and columns are being talked about as well.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy (SMA) Type 1.
Also, vlogger and forums moderator DeAnn Runge talks about her upcoming Dose of DeAnn vlog where she ventures out of what she refers to as hibernation. She shares where she went and why she decided to go as well as encourages viewers to surround themselves with what makes them happy.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses better ways of capturing progression of motor abilities in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Forums Director Kevin Schaefer talks about the struggles of being a disabled extrovert during a pandemic.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing brand company. He talks about building his business, growing up with SMA Type 2, and his love for coffee and heavy metal. Also, Kevin and Alvaro take some time to geek out on movies and Marvel television.
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Link to Alvaro’s Instagram: https://www.instagram.com/_hotwheelz/
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Wrekt Svpply Website: https://www.wrektsvpply.com/
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Alvaro’s YouTube Channel: https://www.youtube.com/channel/UCcWgwtuV4piFFO2wAi5anUA
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA).
Also, several topics are being hashed over on the forums. Among them include breaking in a new wheelchair, frustrations with bureaucratic red tape, reflecting on being homebound for the last year, finding a new PCP and of course the ever popular topic of Evrysdi.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA).
Plus, staying social during a pandemic isn’t easy. Cure SMA has found a way for the SMA community to connect during these difficult times. DeAnn Runge shares her experience with one of the adult online socials hosted by Cure SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolutions, Mindsets, and Emotions”.
Forums Director Kevin Schaefer reads from an article on our HCP site about transitioning to a new wheelchair.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join.
Also, Vlogger and Forums Moderator, DeAnn Runge shares an overview of recent SMA News Today columns. She finds each of them relatable to her life living with SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Spinraza Phase 4 trial to treat children who failed to respond to gene therapy.
DeAnn Runge shares her experience obtaining her first dose of the Pfizer COVID vaccine.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses strategies to keep your child with Spinal Muscular Atrophy (SMA) in school during the cold and flu season.
Forums Director Kevin Schaefer reads the introductory column from our newest writer, Ari Anderson.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
In episode 74, host Kevin Schaefer talks with Katie Napiwocki and Andy Rusch from Wisconsin Rapids. Katie is a columnist for SMA News Today, and her partner Andy is also her primary caregiver. Listen to the story of how they met at MDA camp and learned about the nuances of being in an interabled relationship.
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Link to Katie’s column: https://smanewstoday.com/category/a-wildflower-in-the-wheelderness-a-column-by-katie-napiwocki/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular Atrophy community.
Typically a taboo topic, sex and SMA isn’t discussed often. Forum members and columnists have stepped up to the plate to open the discussion on dating and relationships, helping break the stigma that those with disabilities aren’t sexual beings.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a higher dose Spinraza trial now enrolling Part B after no safety issues were found.
Also, DeAnn Runge shares her personal experience after switching from Spinraza to Evrysdi.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, The Wolf Finally Frees Itself, “This Year, I Want to Be Brave”.
Forums Director Kevin Schaefer talks about the challenges that come with pursuing independence and his goals for the future.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how non-professional caregivers who care for children with Spinal Muscular Atrophy (SMA) carry a high daily burden that negatively affects their lives.
As the moderators return from holiday break the most relevant topics are being discussed on the forums. Recovering from spinal fusion surgery, going to a chiropractor, setting goals for the New Year, dating as well as life hacks are all among what is being talked about.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma is linked in three cases to a serious but treatable blood disorder.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma approval in Canada for the treatment of young Spinal Muscular Atrophy patients.
Also, Forums Director Kevin Schaefer tells the story of a kidney stone and a trip to the ER during the holidays.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 73, host Kevin Schaefer talks with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who has SMA Type II. He talks in this episode about growing up with SMA, his artistic passions, concert accessibility, and more. Happy New Year!
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses administering Spinraza (nusinersen) via a paramedian injection to shorten procedure times and reduce adverse events.
SMA News Today’s forums moderator, DeAnn Runge, discusses one of the most difficult aspects of living with a disability, which is navigating the healthcare system. Brianna Albers latest column, I Can’t Get Evrysdi Yet, Thanks to a Broken Healthcare System, goes into detail on some of the struggles faced while maneuvering this faulty system.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Fun While Sheltering at Home.
SMA News Today’s forums moderator, DeAnn Runge, reads Alyssa Silva’s recent column, Stepping Into a New Me in the Year Ahead, where she does just that.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Made Big Gains Since Diagnosis Day.
SMA News Today’s Columnist and Forums Director, Kevin Schaefer, Kevin Schaefer reflects on being an uncle with SMA and how this role has changed his life.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Smart Tech Is Integral to My Quality of Life.
SMA News Today’s forums moderator, DeAnn Runge, looks back at 2020, and shares some memorable highlights despite a pandemic throwing a wrench into everything. She encourages everyone to go after their goals and dreams in 2021.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying With Broken Wings.
SMA News Today’s forums moderator, DeAnn Runge shares excerpts from Katie Napiwocki's recent column, Finding My Voice within the Disability Community, where she explores the concept of disability and how it relates to her life.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared to other conditions.
SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from an article on our HCP site about the mental and emotional benefits of physical therapy.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients with Spinal Muscular Atrophy (SMA).
SMA News Today’s forums moderator, DeAnn Runge, talks about an article that discusses the Paramedian approach for Spinraza injections. The option of Everysdi is also a hot topic. Since gatherings are out this holiday, one post suggests group streaming holiday movies. It may be unconventional, but is a way to bring togetherness during the holidays.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients.
SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have SMA.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (SMA).
SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from Brianna Albers’ column about facing disappointment during the holiday season.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s ongoing Evrysdi treatments, and share tips for improving one’s mental and physical health.
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Link to DeAnn’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSodnTNonRZjqAunFtBXiFxVPi
Podcast with LaMondre Pough: https://soundcloud.com/sma-news-today/69-interview-with-lamondre-pough
Brianna Albers’ column: https://smanewstoday.com/columns/2020/07/27/disability-pride-month-ada-committed-change/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions such as Spinal Muscular Atrophy (SMA).
SMA News Today’s forums moderator, DeAnn Runge discusses an article written by Alyssa Silva. She talks about how Alyssa had doubts about her ability to start a small business, but she tackled it disregarding the challenges SMA brought to the table.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants.
SMA News Today’s forums moderator, DeAnn Runge talks about how the process is going adjusting to her new wheelchair.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how extensive trial monitoring confirms Evrysdi does not damage vision in children or adults with Spinal Muscular Atrophy (SMA).
SMA News Today’s Forums Director, Kevin Schaefer, talks about how the series “Boy Meets World” impacted him, and the correlation between creativity and SMA.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how olesoxime failed to benefit Spinal Muscular Atrophy (SMA) Type 2 and 3 patients in a final trial.
SMA News Today’s forums moderator, DeAnn Runge discusses recent topics in the SMA News Today forums. A big topic of course is COVID. From dealing with the effects to anticipating the vaccine many discussions revolve around it. In other news Michael Morale’s latest YouTube video has been posted regarding the steps he took to get the latest FDA approved treatment Everysdi. Other conversations in our forums include relieving neck tension, disease progression, switches and favorite assistive technology.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how gene therapy, given directly to the spinal canal, might be safer with a “silencing” step.
SMA News Today’s forums moderator, DeAnn Runge talks about everything shes had to get caught up with after quarantine.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
Forums Director Kevin Schaefer explores the intersection of identity and SMA in his latest column.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
In episode 71, host Kevin Schaefer talks with Kristen Resendez from Harlingen, Texas. Kristen’s son, Jack, has SMA, and she is an active member of the SMA community. During this conversation, she talks about life since Jack’s diagnosis, medical advancements, and advice for other parents.
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To learn more about Evrysdi, please visit www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study has shown Spinraza preserves respiratory muscle strength in Spinal Muscular Atrophy (SMA) Type 2 patients.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung health declines in step with motor loss in Spinal Muscular Atrophy (SMA) Types 2 and 3.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reflects on the insanity of 2020, and talks about the people who got him through this year.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the mild, transient benefits of Spinraza treatment in an infant with severe, Type 0, Spinal Muscular Atrophy (SMA).
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a molecule similar to Evrysdi, is possibly safer at higher doses has been identified.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how a recent urology appointment turned into a bit of a fiasco. He describes this as an “SMA kind of day.”
Also, SMA News Today not only brings you the latest news as it relates to SMA, they also have great content in regards to living with it. DeAnn Runge gives a brief synopsis of Katie Napiwocki’s latest column as well as highlights recent forum topics like easier typing strategies, vitamin D and Friendsgiving.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
In episode 70, host Kevin Schaefer and Michael Morale talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Robotics to distribute assistive technologies to people in the United States. Since working with Kinova, Ron has played an important role in helping clients acquire devices like the JACO robotic arm. He talks about his experiences with the SMA community and answers questions about the JACO arm.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a muscle MRI captures Spinraza’s effects on tissue fibers in two brothers with Type 3 Spinal Muscular Atrophy (SMA).
DeAnn Runge talks about the frustrations that come along with adjusting to a new wheelchair.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) review of reimbursement for SMA Type 3 patients who are unable to walk.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from an article on our healthcare professional site, in which a physical therapist talks about the importance of balance while maneuvering on uneven surfaces for people with SMA.
In the forums Evrysdi remains a hot topic from the need to confirm genetic SMA results to switching from Spinraza to Everysdi. Other topics include celebrating the holidays differently and apps to manage your health.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses muscle-directed therapy SRK-015 and improving motor function in Spinal Muscular Atrophy (SMA) Types 2 and 3.
DeAnn Runge discusses how hibernation is getting old, yet she’s struggling deciding what risks are safe enough for her take.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Brazil for Spinal Muscular Atrophy (SMA).
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about spending time in and out of his chair, in order to give his body the balance it requires.
DeAnn Runge talks about a podcast she did with Kevin Schaefer as well as shares the latest forum topics. Among them include managing stress, pet dilemmas and beach products.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
In this episode, host Kevin Schaefer talks with LaMondré Pough from Columbia, South Carolina. Lamondré is a public speaker, consultant, and advocate for people with disabilities. He currently serves as the CSO for Ruh Global Impact. Listen to LaMondré talk about his education and family life, career path, and where he got the nickname “Bubba.”
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Link to LaMondré’s YouTube Channel: https://www.youtube.com/channel/UCMz-pPI31RslUGXuCK2UkkQ
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Link to Helen Baldwin’s column: https://smanewstoday.com/columns/2019/09/11/assignment-student-brockman-south-carolina/
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how people living with Spinal Muscular Atrophy (SMA) can apply for financial help for treatment to the PAN Foundation.
DeAnn Runge talks about what changes she makes to her routine as winter sets in.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Adults with SMA who have sought specialty care after Spinraza’s approval, may have more severe disease.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from one of his older columns about embracing the imaginative spirit of Halloween.
Plenty of conversations are happening in the forums. In her recent column Brianna Albers shares her feelings about insurance denying her quest for a JACO Robotic Arm. Several topics have revolved around caregivers. Cold feet, in the literal and figurative sense are also among the conversations in the forums.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the “Think 3 at 3 Months” drive, seeking to raise awareness of infant movement milestones that, if missed, could mean Spinal Muscular Atrophy (SMA) or other neuromuscular conditions.
DeAnn Runge talks about the difficulties of navigating the healthcare system to obtain PCA services. She’s looking into Consumer-Directed Community Supports (CDCS) as an option.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 3 adults may have issues regulating a component of cell’s cytoskeleton, according to a study.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about memories of a dying shopping mall in his hometown, and how it made him think about adapting to change.
DeAnn Runge shares the latest column by Brianna Albers, The Evrysdi Chronicles: Waiting for a Diagnosis, where she writes about her frustrating neurology appointment.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
In this episode, host Kevin Schaefer talks with DeAnn Runge, vlogger and forum moderator for SMA News Today.
DeAnn talks about acquiring her new service dog, Horton, and adapting to life with him. She also discusses testing out a JACO robotic arm, and getting a new wheelchair. Finally, Kevin and DeAnn chat about a few recent columns from our main website.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
================================
To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
================================
For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses 4-aminopyridine’s failure to improve muscle function in SMA Type 3 patients.
DeAnn Runge talks about how her new service dog Horton is adjusting to life in Minnesota.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA Type 1 infants, treated with Zolgensma, are achieving milestones.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about a spontaneous trip he took on his 26th birthday last year, and the adventures that came from it.
A variety of topics are being discussed in the forums. Among them include enjoying reading, socially distant celebrations, maskne and delayed deliveries.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses infants who are receiving Evrysdi continue to improve and achieve motor milestones in phase 2 and 3 trial data.
In light of National Disability Employment Awareness Month (NDEAM) DeAnn Runge shares her first job experiences and why it’s important to talk about this topic.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis opening, at FDA request, a new trial of Zolgensma for older patients.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how SMA has affected his ability to draw, and about treasuring the little things.
Recent topics being discussed in the SMA News Today forums include setting boundaries with caregivers, vlogs from DeAnn Runge & Michael Morale as well as reflecting on the changing season.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
In episode 67, host Kevin Schaefer talks with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye tracking technology for people with disabilities. During this interview, Maylan shares her experiences as an adult with SMA Type 2, and offers some advice for others in the community.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza leads to motor gains over time in Spinal Muscular Atrophy (SMA) Type 3 adults, according to a real-life study.
DeAnn Runge talks about meeting her new service dog and what training is like. She also discusses the different types of dog placements that were in her class.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the GridPad Trilogy communication device, which aids people with speech and motor disorders who have Spinal Muscular Atrophy (SMA).
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how the past few months have been for him, and how he’s adapted to a new normal.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Electric Bike Technologies company donating Liberty Trikes to aid the mobility of children with Spinal Muscular Atrophy (SMA) and similar challenges.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses AveXis, now known as Novartis Gene Therapies, focusing on continued work with genetic diseases.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer recaps his adventures during a recent eye doctor appointment, and talks about how everything takes extra effort in the world of SMA.
DeAnn Runge talks about the latest SMA News Today forums topics such as getting a service dog, staying hydrated, preparing for a new wheelchair and more.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses England’s National Institute for Health and Care Excellence (NICE) widening its Zolgensma appraisal due to the European marketing authorization.
DeAnn Runge shares what it was like to demo a JACO Robotic Arm.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the activities currently underway for Newborn Screening Awareness Month.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about his experiences with a BiPAP machine, and the pros and cons of wearing one.
DeAnn shares Halsey’s latest column that talks about wardrobe challenges.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
In episode 66, hosts Kevin Schaefer and Michael Morale discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. They also talk about the clinical trial drug SRK-015, which is developed by Scholar Rock. Finally, Kevin reads excerpts from some of our recent columns.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
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To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums
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For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a nerve-muscle molecule may be an SBMA therapeutic target.
DeAnn Runge talks about being overwhelmed with getting a new wheelchair, a JACO Robotic Arm and a service dog.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Ohio study which finds Zolgensma safe and effective, particularly in younger infants.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer compares the fictional superhero team the X-Men to the SMA community in his latest column.
Recent forum topics include heading back to school even if that means homeschooling, “bad brain days” and nebulizer routines.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA granting “Rare Pediatric Disease” designation to SRK-015 for Spinal Muscular Atrophy (SMA).
DeAnn Runge talks about her process of going to the bathroom.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMA registries offer “real-world experience” that makes the best treatment possible.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer provides an update on his digestive dilemma in his latest column.
DeAnn Runge shares some of the final stories featured in the 31 Days of SMA campaign.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com
In episode 65, host Kevin Schaefer talks with Dwight Reed from Virginia. Dwight is a father of three, and his youngest daughter has SMA Type 1. Dwight discusses his family life, engaging with the SMA community, treatments, and more.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the likely next focus of muscle and combo therapies for Spinal Muscular Atrophy (SMA).
DeAnn Runge shares her thoughts on her 3 year journey with Spinraza.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA debate: might systemic treatment be best?
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from a recent 31 Days of SMA story. Contributor Andres Gonzalez focuses on the topic of resilience and SMA.
DeAnn Runge summarizes a handful of stories featured in the 31 Days of SMA campaign as well as touches on other interesting forum topics being discussed.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
In this episode, members of the SMA News Today team discuss assistive technologies that have had a unique impact on their lives. These technologies include electric wheelchairs, Amazon Echo devices, the JACO robotic arm, adaptive vehicles, and more.
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To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses the story from a 61 year old with SMA Type 3, who says, with Evrysdi, “every day is good”.
DeAnn Runge talks about putting together a hospital bag to make hospital stays more comfortable.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi and Spinraza target the SMN2 gene, but in different ways.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the joy of always learning in his latest column.
On the forums Evrysdi (risdiplam) is still a hot topic. Also, two of the featured 31 Days of SMA have different perspectives on education.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the expertise in RNA biology at the core of PTC’s formative work with Evrysdi.
DeAnn Runge talks about the considerations of switching from Spinraza to Evrysdi and how she came to her decision.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Evrysdi has parents “totally optimistic” for the future of their boy with SMA Type 2.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses frequently asked questions about Evrysdi (Risdiplam).
Patients needing information can also go online at Evrysdi.com, or call 1-833-EVRYSDI (833-387-9734).
The forums are buzzing with the announcement Evrysdi has been approved for the treatment of SMA. Many great stories have also been shared this week during the 31 Days of SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA approval of risdiplam, now known as Evrysdi, as the first oral treatment for all SMA types.
This flash briefing is a summary of the article that was written by SMA News Today. To read the article in its entirety, please click on the following link: https://smanewstoday.com/2020/08/07/fda-approves-evrysdi-risdiplam-first-oral-sma-treatment/
Also, DeAnn Runge describes the dreaded task of finding a new caregiver.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses plans being advanced for a biomarkers panel to assess drug-induced skeletal muscle injury in SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 63, host Kevin Schaefer talks with Hugo Trevino from Chicago, Illinois. Hugo is a disability advocate and an academic advisor for students with disabilities at the University of Illinois in Chicago, and he has SMA Type 3. Kevin and Hugo talk about advocacy, school experiences, ableism and more. Also, hear the story of how Hugo and his sister had to fight for a ramp so they could get on stage for their high school graduation.
To learn more about spinal muscular atrophy, visit our website at http://www.smanewstoday.com.
Forums Director Kevin Schaefer reads from one of the stories from our 31 Days of SMA initiative. This story focuses on dating and disability. Also, DeAnn Runge gives an overview of the first few days of the 31 Days of SMA initiative.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the greatest loss of motor skills at ages 5 to 13 in SMA Type 2 patients.
Now that DeAnn Runge had her wheelchair evaluation she has to decide what wheelchair will best suit her needs.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news Biogen is planning to launch a first trial, testing Spinraza in children previously given Zolgensma.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about taking on extra responsibilities while his Mom recovers from surgery.
Welcome to all of the new forum members. This week on the forums some of the topics being discussed include thinking ahead, disability vs. disease and diverse reading selections.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the news that Iowa adds SMA as a pilot program for newborn screening.
With so much going on in the world DeAnn’s welcomed distraction comes in the form of a kitten. She shares how it came into her life at the most appropriate time.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza eases fatigue in adults with SMA, but that benefit wanes.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about socially distanced visits with friends and 31 Days of SMA. DeAnn Runge also talks about socially distant visits, reintroducing PCA’s and disability pride month.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
In episode 62, host Kevin Schaefer talks with Shawn Stewart from southern California. Shawn has his own tax service business, and he has SMA Type 3. He discusses growing up with a disability, adult life, and getting married in 2019. Listen here!
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how SMN protein levels in blood, may mark SMA severity and help guide treatment. For SMA News Today forums moderator DeAnn Runge, Disability Pride month is a time to own your disability and live life to the fullest. She reads an article by Katie Napiwocki which is a prime example of doing just that. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how new Glia cell markers may provide insight into neuromuscular diseases, including SMA and ALS.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about embracing Disability Pride Month.
Summer is well under way and ways to beat the summer heat is a topic of discussion on the SMA forums. Travel and equipment rental is also something being talked about.
Are you interested in learning more about spinal muscular atrophy? If so, please visit http://www.smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the significant limits to treatment seen for a Spinal Muscular Atrophy, Type 0, baby.
Despite feeling discontent DeAnn shares how she tries to look past what she can't do, focus on what she can and learns to be content with where she’s at.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses disparities found in parents and children’s perceptions of Spinal Muscular Atrophy.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how having SMA has led to many positive interactions with strangers.
On the forums this week returning to school is a topic of discussion as well as summer playlists and the latest column by Brianna Albers.
Are you interested in learning more about spinal muscular atrophy? If so, please visit http://smanewstoday.com/
In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. They discuss webinar presentations, research updates, and virtual social events which they participated in.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com
SMA News Today’s multimedia associate, Price Wooldridge, discusses a motor function improvement after one year of Spinraza in children with SMA Types 1-2.
DeAnn Runge talks about the importance of embracing your differences and what made that easier for her. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a systemic treatment that may be more effective for Spinal Muscular Atrophy.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reflects on the life of his service dog Pandy, who recently passed away.
Recent topics of discussion on the forums include switching treatments, summer reading and dealing with health issues on top of SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit http://www.smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam continues to show promise for treating SMA.
Forums moderator DeAnn Runge shares her attempt to pull off a surprise. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the upcoming initiative 31 Days of SMA, which is a collection of stories from people in the SMA community.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how 96% of children given Spinraza as newborns are able to walk according to the NUTURE trial.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column, which highlights the new patient initiative SMA My Way.
Forums moderator DeAnn Runge discusses her colleague’s connection to the new platform SMA My Way. She goes on to talk about what’s being binge watched on Netflix and also what you can find on the smanewstoday.com website.
Are you interested in learning more about spinal muscular atrophy? If so, please visit http://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses interviews that probe how unaffected siblings learn the genetic implications of Spinal Muscular Atrophy.
Forums moderator DeAnn Runge talks about how despite having her opinion be dismissed due to her disability her viewpoint still counts.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how too little is known about the care needs of adults with Spinal Muscular Atrophy.
Forums Director Kevin Schaefer talks about the 2019 memoir “The Pretty One,” written by disability advocate Keah Brown.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about taking part in the first virtual Cure SMA conference.
This week’s forum topics include DeAnn’s latest vlog regarding creating a sanctuary, scoliosis as an adult as well as epic wheelchair stories.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
In episode 60, host Kevin Schaefer interviews George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3. He currently works as a mortgage loan officer.
During this discussion, George talks about growing up with SMA, his mindset of perseverance, and his real estate career.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how heart problems in SMA may be tied to calcium dysregulation.
Forums moderator DeAnn Runge shares her thoughts on why reflecting on life a year ago should evoke happiness and joy rather than sadness.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SHINE study data showing Spinraza has sustained efficacy.
In Brianna Albers’ latest column, she calls for more black representation in the disability community.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about celebrating six years with his caregiver Randy.
With the Cure SMA Conference going virtual this year it’s led to many topics of conversation on the forums. In other discussions efforts to be inclusive regarding diversity in the SMA community have been brought up. Michael Morale’s latest video regarding tips on wheelchair selection has been released as well.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how feeding issues still are common among SMA Type 1 infants, despite new therapy options.
As salons open up forums moderator talks about how she decided to risk it for a haircut.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s, Senior Director of Multichannel Content, Michael Morale, discusses a real-world study that shows that Spinraza meets most therapeutic expectations of adult SMA patients.
Forums Director Kevin Schaefer shares the story of the first trip he took with his caregiver Randy a few years ago.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In episode 59, host Kevin Schaefer talks with our very own columnist Brianna Albers. Brianna talks about quarantine, values-based living, and how she's keeping herself occupied during the COVID-19 pandemic. It's easy to wonder how long the pandemic will last and to dream about life returning to normal, but Brianna encourages listeners to facilitate contentment in the present.
To keep herself engaged with what matters to her, Brianna is revising the first draft of her space fantasy novel, which features a disabled protagonist. She's also looking forward to playing with her new JACO robotic arm! Listen here, and check out Brianna’s weekly column, “The Wolf Finally Frees Itself.”
Note: Brianna does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a range of voices. It is our responsibility to highlight the diversity within the SMA community.
To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
Forums Director Kevin Schaefer shares some tips for staying active and mentally engaged this summer, while still remaining in self-isolation.
A hot topic on the forums is how the JACO Robotic Arm opens doors both literally and figuratively. Also being discussed are comfort levels with resuming activities as the world opens up as well as altering summer plans, like taking SMA conference virtual.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study finds respiratory weakness in SMA is most pronounced in childhood. Since 2016 several treatment options for SMA have become available. Forums moderator DeAnn Runge discusses these options.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA.
SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA treatment and screening programs “essential” in the Covid-19 pandemic.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments.
Masks are a hot topic on the forums. With finding it difficult to breathe through them and some experiencing negative effects from wearing them, forum members are seeking alternatives. Other topics being discussed are questions posed during a courageous conversations panel, talking to your doctors about risdiplam and combating fatigue with matcha.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
Despite not being able to shop in person, DeAnn Runge finds a way to replace her television that decided to quit working at the most inopportune time.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study addresses dilemmas regarding newborn screening and SMA treatment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads the latest post from caregiver columnist Michael Casten.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a family and doctor “partnership” that led to a baby’s Spinraza treatment.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the fatigue he experiences prior to a Spinraza injection.
DeAnn’s latest vlog has been posted where she shows what’s included in the Cure SMA COVID-19 care package. Both Katie Napiwocki and Alyssa Silva have columns being discussed in the forums and the latest roundtable talking about Spinraza during the coronavirus is available for listening.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting their Spinraza appointments and other medical procedures. Hosts Kevin Schaefer and Michael Morale, and forum moderators DeAnn Runge and Alyssa Silva, each share their personal experiences regarding this subject. They also discuss how telemedicine could potentially become the new normal for rare disease patients.
To learn more about spinal muscular atrophy, visit our main website at www.smanewstoday.com.
Forums moderator DeAnn Runge shares how she’s navigating the current world situation and how resuming operations in the next phase poses new challenges and concerns.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how lung ultrasound is a reliable option to chest X-rays for monitoring children.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from Brianna Albers’ latest column “How Do We Maintain Post-traumatic Growth?”
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study suggests the interplay of motor neurons and Glial cells is at the root of Spinal Muscular Atrophy.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In the forums Michael Morale’s latest video, which points out the differences between risdiplam and SRK-015 as potential SMA treatments, has been a topic of conversation.
Brianna Albers' series on dealing with anxiety that comes along with the coronavirus has been a popular topic as well as discussions about what “able-bodied” people take for granted, liquid albuterol and disabled authors.
Forums Director Kevin Schaefer talks compares living with SMA to an ongoing chess match in his latest column.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
Forums moderator DeAnn Runge shares her experience of getting Spinraza amidst the COVID pandemic.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Risdiplam defies SMA “natural history” in type 1 infants, according to FIREFISH study data.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion surgery.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book discussion.
To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities.
To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular disorders.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2.
SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pandemic.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift.
Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital preparedness folders.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG trial.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spinraza.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability.
Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic assistance devices have also been topics of conversation.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam.
Then in part two, special guest Ralph Yaniz joins Kevin and Michael to discuss the new Netflix documentary “Crip Camp.” Ralph is a columnist for Muscular Dystrophy News Today, and a disability rights activist. Listen to their thoughts on this film, which explores the early days of the disability rights movement.
To learn more about spinal muscular atrophy, visit www.smanewstoday.com.
To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how adult patients with Spinal Muscular Atrophy benefit from Spinraza treatments.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma for treatment of Spinal Muscular Atrophy in Japan.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. Also don’t forget to check out DeAnn’s latest vlog on having fun with subscription boxes.
Forums Director Kevin Schaefer talks about how his lifelong obsession with action figures contributes to his identity as a storyteller.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliative care for SMA Type 1 babies has improved.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA shifting it’s Risdiplam decision to August to include data on older patients.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more.
Also, forums Director Kevin Schaefer reviews the new Netflix documentary “Crip Camp,” which tells the story of the early disability rights movement.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. During this discussion, he talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life.
Victor’s website: www.victortheinspiration.com Victor’s Instagram: @victortheinspiration
Are you interested in learning more about Spinal Muscular Atrophy? Please visit www.smanewstoday.com
Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how scoliosis surgery in SMA children is linked to permanent motor skill loss.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities.
SMA News Today’s multimedia associate, Price Wooldridge, discusses markers of inflammation essential for AAV gene therapy use.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times.
Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now compares.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums moderator DeAnn Runge talks about how having a service dog has enhanced her life.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a global rare disease group’s goal to have 1,000 new therapies by 2027, despite the current COVID-19 pandemic.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer shares some book, movie, and Spotify recommendations for people who are on quarantine.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which recommends a lower radiation dose for Spinraza scans.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about alternative solutions to physical therapy. As a result of the COVID-19 pandemic, he has to refrain from going to his appointments for now.
Also, believe it or not, despite being high on the list, the coronavirus isn’t the only topic of conversation on the forums. DeAnn is in need of a recommendation for a cell phone and Alyssa is wondering what made you smile today.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
Forums moderator DeAnn Runge shares her message to friends and family in regards to COVID-19 and their lives being turned upside down.
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new test which screens 420 genes for markers of Spinal Muscular Atrophy and other diseases. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer shares some of his tips for self-isolation during the Coronavirus (COVID-19) outbreak.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the synaptotagmin 13 (SYT13) gene can prolong life in mice with ALS and SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
One of the main topics of conversation over on the forums is COVID-19. Posted are links to resources and tips on staying productive during lockdown. DeAnn also discusses where to find the latest SMA News Today columns.
Also, forums Director Kevin Schaefer shares his thoughts on staying cautious during the Coronavirus pandemic, and how he’s protecting himself.
Are you interested in learning more about spinal muscular atrophy? If so, please visit www.smanewstoday.com/
In episode 54, Michael and I discuss the global outbreak of Coronavirus (COVID-19). We share our tips for how others in the SMA community can best protect themselves, as well as their caregivers. Please note that this is not professional medical advice. We’re just sharing our thoughts and opinions.
How are you all doing? Any tips for self-isolation?
Anticipation is growing as Roche/Genentech's treatment risdiplam, the first oral medication to treat SMA, is under FDA review.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the lack of SMA protein may also directly contribute to SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s Senior Director of Multichannel Content, Michael Morale, discusses the importance of physical therapy, and how physical therapy can not only help avoid problems, but also correct some problems that have already occurred.
Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Institute for Gene Therapies seeks to modernize the regulatory reimbursement framework.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
In the forums a topic of discussion has been the thing that’s on everyone’s mind, the Novel Coronavirus, also known as COVID19. Spinraza has also been discussed. Other topics include bloating, SPC’s and being spontaneous.
Spontaneity can be difficult when you have SMA. Sometimes it even takes planning. Forums moderator DeAnn Runge shares how she does it and is looking for advice on how to be even more spontaneous.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how body composition may be a biomarker of motor function in SMA patients.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about maintaining long-distance friendships, particularly with people in the SMA community.
SMA News Today’s multimedia associate, Price Wooldridge, details an MDA executive’s discussion of gene therapies, SMN2 gene modifiers, and the challenges in treating SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
February 29th was recognized as Rare Disease Day across the world. SMA News Today columnists shared what this day meant to them. A social media campaign was also successful in bringing awareness to rare diseases and celebrating #WhatMakesMeRareSMA.
Also, forums Director Kevin Schaefer shares how music plays a big part in his life in his latest column.
In episode 53, host Kevin Schaefer interviews our very own Alyssa Silva. Alyssa is from Cumberland, Rhode Island, and she is a columnist and forums moderator here at SMA News Today. She’s also the founder of the nonprofit organization Working on Walking. Throughout this conversation, she talks about growing up with SMA Type 1, her college experiences, writing, and more.
Are you interested in learning more about Spinal Muscular Atrophy? Please visit www.smanewstoday.com
When it comes to public interactions with people who have disabilities there are no set rules. As someone who has a disability, DeAnn shares her thoughts on this topic.
Also, listen to SMA News Today’s multimedia associate, Price Wooldridge, discuss how the Muscular Dystrophy Association leads in helping others with care centers, research, and a summer camp.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about his most recent Spinraza injection and SMA News Today’s multimedia associate, Price Wooldridge, discusses the Risdiplam success in treating SMA Type 1 babies in the FIREFISH study.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about the upcoming Rare Disease Day, and what it means to him.
Also, DeAnn Runge shares the latest activity going on in the forums. Among the topics being discussed are accessible parking, sleepovers and product reviews.
Having gone through a life threatening ordeal, forums moderator DeAnn Runge knows despite being physically weak she has a great deal of strength. As a reminder she has a little blue notebook.
SMA News Today’s multimedia associate, Price Wooldridge, discusses the discovery of a potential new SMA genetic modifier. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums.
Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how a CSF protein profile may help predict Spinraza responses in late-onset SMA patients.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer reads from this week’s motivational post in the SMA News Today forums and we're also happy to welcome Katie Napiwocki back into the rotation of SMA News Today columnists! In her latest column, Peering Through the Fog of Fear, she explains why she took a break from writing about SMA and how she came to the decision to stop her Spinraza treatments.
In episode 52, host Kevin Schaefer talks with Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day.
To learn more about Spinal Muscular Atrophy, visit www.smanewstoday.com.
Finding the balance between living cautiously and fearfully can be challenging. Forums moderator DeAnn Runge shares how she navigates that delicate balance.
Also, SMA News Today’s multimedia associate, Price Wooldridge, discusses how magnetic rods may be an alternative treatment to correct scoliosis in children with SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses an early access program from Roche for SMA therapy Risdiplam in Europe and forums Director Kevin Schaefer talks about forming friendships with his caregivers, and why he thinks this is important.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Some recent topics being discussed on the forums include accessible travel and becoming friends with your caregivers. Also, Dose of DeAnn has a new episode where she collaborates with a community member to talk about the importance of exercise, and forums Director Kevin Schaefer talks about his time working for his college student newspaper.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new treatment algorithm for SMA infants diagnosed via vital newborn screening. Also, for those with mobility issues one of the most difficult aspects of life can be going to the bathroom. Options to make it easier do exist. A couple options that can be discussed with a doctor are a suprapubic catheter or a Mitrofanoff.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the ZPR1 protein may be a new potential therapeutic target for SMA. Also, Forums Director Kevin Schaefer talks about an NBC pilot, in which one of the main characters is a kid with SMA.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
Forums Director Kevin Schaefer talks about embracing the power of his voice in his latest column. Also, every family goes through their share of triumphs and tribulations. In Michael Casten’s latest column he reflects on their most recent struggles as a family.
Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/
In episode 51, I talked with Ryan Manriquez and Nora Zade from Sacramento, California. Ryan is a college student with SMA Type 2, and he and Nora have been dating for several months. Both are sophomores at Folsom Lake College, and they’ll be transferring to UC Davis this fall. Throughout this conversation, they talk about their relationship, college life, and more.
SMA News Today’s multimedia associate, Price Wooldridge, discusses how up to 100 free Zolgensma treatments are going to go out worldwide in 2020 under an access program. Also, one thing DeAnn Runge struggles with is finding the line between determination and a waste of time. After spending half an hour trying to unplug her iPad, she decided she has better things to do with her time.
Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
Forums Director Kevin Schaefer talks about trying to manage stomach issues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn Runge. Discussions range from how you communicate to strangers your vulnerability to germs to talking about subscription boxes breaking up the monotony of winter and more.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
Go to our forums: http://bit.ly/forumsflashbriefings
Forums Director Kevin Schaefer recounts the story of his adventures in Philadelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make going to the bathroom easier were talked about. Other topics included taking advantage of opportunities, the 2020 Cure SMA conference and the International Day of Acceptance.
In episode 50, hosts Kevin Schaefer and Michael Morale discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. They also talk about two of their recent columns from the main site. The first is about media representation of people with disabilities; and the second, written by parent columnist Michael Casten, is about working through life’s frustrations. Listen here, and share your thoughts in our forums.
Links:
-News Story: https://smanewstoday.com/2020/01/15/roche-starts-global-early-access-program-for-sma-therapy-risdiplam-in-europe/
-Kevin’s Column: https://smanewstoday.com/2020/01/14/media-disability-representation-storytelling-comics/
-Michael Casten’s Column: https://smanewstoday.com/2020/01/15/frustrations-life-dog/
We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as she’s gotten older.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss a study that states how a multidisciplinary approach improves the Spinraza dosing process in SMA patients. Also, Forums Director Kevin Schaefer reads the latest piece by parent columnist Michael Casten.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
Forums Director Kevin Schaefer talks about the importance of media representation for people with disabilities, and calls for more of it in 2020. Also, great conversations are going on in the forums. Alyssa is adjusting to her new wheelchair. DeAnn is dealing with a caregiver who is under the weather. Other topics include managing caregivers, when kids recognize disability and how humorous interactions can lighten the day.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss how targeted genetic screening may be useful in diagnosing patients with SMA-like symptoms. Also, a harmless prank can be fun, but it’s not always easy when you have SMA. With the help of her niece DeAnn pulled a prank on her Mom.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss early trial data that shows SRK-015 increases myostatin growth factor levels up to 100-fold in SMA patients & Forums Director Kevin Schaefer reads an excerpt from Alyssa Silva’s latest column.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
In her most recent column, I Don’t Need to Win to Be a Winner: Volunteering Is Its Own Reward, Halsey explains how her volunteer efforts have been recognized. Halsey not only works with a great group of people at Turnstone, they acknowledge and support the work she does. Also, Forums Director Kevin Schaefer talks about how having SMA has led to some humorous interactions with people.
If you would like more information regarding SMA, please go to www.smanewstoday.com
In episode 49, host Kevin Schaefer interviews Ashley Fox from Southern California. Ashley is currently studying psychology at a community college, and she has SMA type 2. She talks about growing up with SMA, becoming a cheerleader in high school, and recently starting Spinraza.
Visit our website: http://smanewstoday.com
We discuss how Asuragen is stating that a new screening kit, quickly and thoroughly analyzes SMN1 and SMN2 genes in the lab. & With all the variables that can come into play getting her Spinraza injection, DeAnn never feels totally at ease. She’s grateful for the opportunity and shares her journey to dose 10.
Are you interested in learning more about the spinal muscular atrophy? Please visit www.smanewstoday.com
We discuss how interim phase 2/3 data shows that risdiplam improves motor function in people with SMA types 2 and 3 & setting new year’s resolutions when you have SMA by Forums Director Kevin Schaefer.
If you would like more information regarding SMA, please go to www.smanewstoday.com
We discuss how AveXis is unaware of the cause of inflammation, that led to the STRONG trial hold of AVXS-101. Forums Director Kevin Schaefer shares some of his highlights from this year.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer recounts the story of acquiring his JACO robotic arm in his latest column & DeAnn Runge talks about Kala Godin's latest column, Pondering the Possibilities of the Future, where she writes about anticipating treatments that are on the horizon. DeAnn Runge can relate to this because she had some of the same feelings while awaiting Spinraza. Can you relate?
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
In episode 48, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own DeAnn Runge. DeAnn discusses the origins of her YouTube series “Dose of DeAnn.” She also explains why she shares her story of living with SMA with others.
We discuss the FDA granting priority review for risdiplam, which is a potential oral therapy for all SMA types. & How do you guys manage to do fun things that require a bit of travel? After hearing her favorite band will be touring nearby, forums moderator DeAnn Runge is trying to devise a plan to go. Unfortunately it doesn’t look like it will work out because of how difficult it is to travel.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how BillionToOne announced that prenatal blood test for SMA are now available in 4 countries in Europe and Forums Director Kevin Schaefer talks about being proactive and maintaining an independent lifestyle with SMA.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer reflects on his love for movies, and especially the films that taught him lessons about living with SMA. Also, on the forums, www.smanewstoday.com/forums, there’s a specific category just for YouTube videos. All of the latest videos can be found from the Morale Monologue, Ryan’s Robotics and Dose of DeAnn. Here is a brief recap of the most recent episodes.
Are you interested in learning more about SMA? Please visit www.smanewstoday.com
We discuss how researchers are stating how exercise can help increase functional SMN protein, and can supplement SMA treatments. Being sick more holidays than being healthy have nurtured some rather unconventional traditions for DeAnn. Despite this being the most worrisome time of the year it can also be the best. There’s nothing like expressing love and gratitude between family and friends.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss a study that suggests how MRI fiber tracking may be a potential biomarker of SMA course and response to therapy. Forums Director Kevin Schaefer shares his thoughts on the experimental therapy risdiplam. If FDA-approved, this drug would be the first oral treatment for SMA.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer reflects on the past decade in his latest column. Although the forum moderators took a short break from posting over the Thanksgiving holiday, there are several great conversations going on: Risdiplam getting fast tracked for approval raises questions in the community and Giving Tuesday is a topic of interest as well along with the subject of social media.
In episode 47, host Kevin Schaefer talks with James Ian from Los Angeles, California. James is a singer, songwriter, and actor, and he has SMA Type 3. Kevin and James talk about music, living with SMA, and media representation of people with disabilities.
Photo cred: Travis Tanner Photography
James Ian on Spotify: https://open.spotify.com/artist/0KpC5Kw93tkXOVPpNnVbuG?si=u2Ar4jVKSmyyTFaY_fyauA
James Ian Instagram: https://www.instagram.com/jamesianmusic/
We discuss how a study of MRI scans of facial nerves, can help diagnose spinal and bulbar muscular atrophy & Along with being a friend, pets teach responsibility. As long as they get TLC, they don’t seem to care about disabilities. If you or your child has a pet on their Christmas wish-list, it might be worth considering.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how a mouse study suggests that a new potential SMA therapeutic target was found in muscle cells and Forums Director Kevin Schaefer talks about expressing gratitude; he also invites listeners to join the SMA News Today forums.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer talks about how his rare disease family goes beyond the SMA community. Also, here at SMA News Today we have top notch columnists who share personal stories about their lives connected with SMA; DeAnn presents a brief summary of the most recent columns.
We discuss how a mouse study suggests that SMA patients may benefit from a low-fat diet. DeAnns' perspective: despite having a positive attitude, dealing with disappointment is inevitable. Although it can be difficult, it doesn’t need to be the end of the world. Here are a couple examples of moving past major disappointments.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how an SMN protein study in fetuses and children, emphasize the importance of early SMA treatment in newborn screening.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer talks about the importance of rejuvenation for people with SMA. A lot of great conversations are going on in the forums: DeAnn Runge outlines the latest and invites everyone to join in the discussion.
In episode 46, hosts Kevin Schaefer and Michael Morale discuss the latest news regarding Roche and Genentech’s experimental therapy Risdiplam. We also talk about AveXis’ decision to put its STRONG trial on temporary hold, and some of our recent columns.
We discuss a German study that suggests how Spinraza improved or stabilized motor and lung functions in SMA type 3 adults. Having a multitude of nurses and caregivers coming in and out of your life isn’t easy. Forums moderator DeAnn Runge shares her personal frustration with having high turnover in this field.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com
We discuss early trial data that shows how Zolgensma produces promising results in young children with type II SMA. Forums Director Kevin Schaefer reads an excerpt from Kala Godin’s latest column, “Progression Looks Different for People with SMA.”
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer talks about having a high quality of life while living with SMA. DeAnn Runge's Segment: In his column, Five Servings of Strength, Michael Casten shares how his family meets challenges head on. Most recently he chronicles Halloween night and in another column shares the little things they do to put family first.
Forums moderator DeAnn Runge shares how stressful the scheduling process for Spinraza is for her. With so many aspects to consider it’s increasingly becoming a pain. Even more so than the injection itself.
We discuss how Scholar Rock’s early data supports the development of SRK-015, for SMA types 2 and 3.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer recaps some of our recent columns. We discuss how risdiplam continues to show survival and motor function improvements, according to trial results. Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
A new moderator is joining the SMA News Today forums. Alyssa Silva is a current columnist and will also be moderating the forums along with her co-moderators to give a unique perspective on a variety of topics.
Forums Director Kevin Schaefer shares his thoughts on existing and emerging treatments for SMA.
In episode 45, host Kevin Schaefer talks with Jim and Becky Berry from Myrtle Beach, South Carolina. Jim and Becky share their experiences as parents of two sons with SMA, and they talk about the life of their late son Carson.
We discuss how the FDA placed a partial hold on the STRONG trial of AVXS-101, citing a concern that was seen in an animal study. This time of year forums moderator DeAnn Runge tends to Binge watch TV series. Her recent binge, Call the Midwife, led her to inquire about the history of SMA. Are you familiar with how SMA was discovered? With her knowledge that SMA was around when the show took place, she’s curious if a case will present itself during the course of the show.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com
We discuss how the SMA STAT genetic test, that’s offered free in the US, is enabling earlier diagnosis and Forums Director Kevin Schaefer reads from a forum topic about employment and SMA.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com
Forums Director Kevin Schaefer talks about embracing the imaginative spirit of Halloween. Forums moderator DeAnn Runge shares what’s been going on in the forums over the past week. Topics include health, winter activities and even SMA history. Feel free to join in on the conversation.
Join our forums: https://smanewstoday.com/forums/register/
We discuss how Skye, the first baby in Connecticut that was treated with Zolgensma, is getting healthier and stronger & Although Halloween was never her favorite holiday, forums moderator DeAnn Runge shares how times have changed. Going door to door is becoming a thing of the past. Halloween has become a holiday to embrace.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how Oklahoma ranks the lowest on programs that are key to rare diseases on NORDs 2019 state report card and Forums Director Kevin Schaefer talks about some of the recent columns on our main website.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums Director Kevin Schaefer talks about meeting one of his nerd icons, and how her writing inspired his own & forums moderator DeAnn Runge provides an update on recent forum activity. She welcomes you to join the discussion on topics such as employment, family sick rules, ableist encounters and more.
We discuss how rare disease groups are seeking public support to renew Newborn Screening Act in Senate & As winter approaches DeAnn talks about how, much like her plants, she can’t tolerate the cold. Because of this she tends to hibernate making her home her sanctuary. Do you have tips on making your space your sanctuary? How about ways to make winter less stressful? Join the discussion in our forums.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how small differences that marks SMA type 2, brought a baby girl’s family from the UK to Ohio for her Zolgensma treatment & Forums Director Kevin Schaefer reads from Alyssa Silva’s latest column, “On Fulfilling My Role as Maid of Honor.”
Are you interested in learning more about the latest treatment for spinal muscular atrophy?
Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Forums moderator DeAnn Runge gives us an overview of the forums and updates us on recent discussions. If you haven’t already checked out the forums she encourages you to head on over and introduce yourself. Also, Forums Director Kevin Schaefer talks about how his love of coming-of-age stories relates to living with SMA.
Hosts Kevin Schaefer and Michael Morale discuss the latest news regarding SMA therapies Spinraza and Risdiplam, as well as some of our recent columns. Listen here, and share your thoughts in the SMA News Today forums.
For information regarding the DEVOTE trial, please click on the following link: https://www.clinicaltrials.gov/ct2/show/NCT04089566?term=NCT04089566&rank=1
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment.
We discuss how clinicians described a rare case of SMA associated with a teen who had epilepsy. Although alternative options for seating look appealing, forums moderator DeAnn Runge explains why this isn’t usually the case for her. She finds her wheelchair to be the most comfortable place.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how additional space for Zolgensma production is the goal of AveXis Catalent partnership and Forums Director Kevin Schaefer talks about some of the trending topics in the SMA News Today forums.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that problems with metabolising fat molecules are evident and worrisome in SMA children and Forums Director Kevin Schaefer talks about when people call him “inspirational.”
We discuss early trial data showing how risdiplam is raising SMN levels in older patients in ways that seem durable & Despite having appositive attitude, dealing with disappointment is inevitable. Although it can be difficult, it doesn’t need to be the end of the world. Here are a couple examples of moving past major disappointments.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
We discuss how adding Reldesemtiv to Spinraza or the investigational SMN-C1 improved muscle function in an SMA mouse model. Community Development Manager Kevin Schaefer reads an excerpt from Alyssa Silva’s column, “Finding Humor in Stinky Situations.”
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how a prenatal blood test for SMA and other single gene diseases is now available. Community Development Manager Kevin Schaefer talks about “rolling through the seasons” when you have SMA.
In episode 43, host Kevin Schaefer interviews Jeff Olander from Raleigh, North Carolina. Jeff is a PhD student at UNC-Chapel Hill, studying physics. He talks in this interview about his education, career goals, and his life with SMA Type 2.
We discuss a Macedonian Gaucher activist, whose publicizing the plight of rare disease patients. Although fall and winter are her least favorite seasons, DeAnn finds being prepared can help the transition. She shares what she does to welcome, or at least tolerate the change of seasons.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com
We discuss how the European Spinraza label was updated to reflect long-term benefits in broad ranges of SMA patients and Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a Dutch study that states there is a high probability of scoliosis surgery found for SMA types 1C, and 2. Community Development Manager Kevin Schaefer talks about a new memoir by disability rights activist Keah Brown.
We discuss how Spinraza gives babies with type 1 SMA in North Macedonia hope for a healthy life. Also, SMA News Today’s forums moderator, DeAnn Runge, shares how service dogs were introduced into her life, and how service dog fraud jeopardizes their role.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. We discuss how a phase 2 trial shows presymptomatic Spinraza treatment leads to SMA children reaching otherwise unachievable milestones.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Community Development Manager Kevin Schaefer talks about some of the trending topics in the SMA News Today forums. SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the world’s first Alport stamp is a Macedonian mom’s latest win for rare disease patients.
In episode 42, host Kevin Schaefer talks with Kyle Harris from San Diego, California. Kyle talks about growing up with SMA Type 3, college, and accessibility in the modern world.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how an RNA therapy that’s delivered by a viral vector may hold potential to treat SMA. Also, SMA News Today’s forums moderator, DeAnn Runge discusses how airlines do not allow wheelchair users to stay in their chairs during the flights. She describes how vulnerable it feels being separated from your chair during airline travel.
Are you interested in learning more about the latest treatment for spinal muscular atrophy? Visit TreatSMA.com to see how this treatment works, hear about family stories, and learn about the steps to starting treatment. Visit TreatSMA.com.
Community Development Manager Kevin Schaefer reads from a motivational post in the SMA News Today forums. We discuss why screening tests and other steps for Zolgensma’s use are necessary.
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses an ongoing trial that states how SMA candidate SRK-015 shows promise in healthy volunteers and Community Development Manager Kevin Schaefer talks about his journey toward more independence.
We discuss a study that suggests children with SMA are at risk of weak bones and fractures and Community Development Manager Kevin Schaefer talks about his journey toward more independence.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how AveXis’ OneGene program could smooth the path for families wanting Zolgensma and Community Development Manager Kevin Schaefer talks about some trending discussions in the SMA News Today forums.
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses likely future work into Zolgensma, gene therapies and other SMA treatments. Community Development Manager Kevin Schaefer talks about the nuances of reading a physical book when you have SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
Hosts Kevin Schaefer and Michael Morale discuss a recent webinar about AveXis’ gene therapy Zolgensma. Then in part two, they talk about SMA awareness month, and a couple of our recent columns.
We discuss how NORD honors industry in patient advocates at rare impact awards gala and SMA News Today forums moderator DeAnn Runge shares her perspective on overprotective parents. A college friend is coming to visit and instead of allowing her friend, who also has a disability, to do this on her own her mother is tagging along. DeAnn hopes in leading by example her friends Mom will find a better balance between support and independence with her daughter.
We discuss a study that suggests that suggests Anti-epileptic Keppra could be a candidate for treatment of SMA and Community Development Manager Kevin Schaefer reads his latest column about acquiring personal space, via his Batcave.
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma’s arrival adds urgency to SMA newborn screening efforts in the US and Community Development Manager Kevin Schaefer reads one of the final 31 Days of SMA stories. In this story, Natalie Russo talks about her and her brother having SMA.
We discuss how Eurordis unveils an integrated care initiative for rare disease patients. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses working with physical therapists, and making them more comfortable while working out with patients with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a study that suggests that the small RNA molecule miR-23a, may have a therapeutic role in SMA. Also, Community Development Manager Kevin Schaefer reads from his latest column. In this post, he reflects on how a college writing course prepared him for his career.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses an interview where researchers talk about Zolgensma’s price, and its cure one, cure many potential. Also, Community Development Manager Kevin Schaefer reads from the latest 31 Days of SMA story. This post focuses on concert accessibility.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 40 of the SMA News Today Podcast, host Kevin Schaefer interviews Kellie Cusack. Kellie lives in New Jersey with her family, and is currently studying journalism at a community college. She talks about growing up with SMA Type II, blogging, and her involvement with the SMA community.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how raising levels of Alpha-COP proteins, seems to ease SMA disease severity in mouse models. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about being on Spinraza for 2 years, and also gives an update regarding her 9th Spinraza injection.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about diversity within the SMA community.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how patients with SMA Types 1, 2, & 3, options for Zolgensma exist, and more may be on the way. Also, Community Development Manager Kevin Schaefer reads from Angela Titcombe’s 31 Days of SMA story. Angela talks about being a teacher with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how SMA patients in Ontario are granted wider access to Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how current treatments for SMA are giving those of us with the disease, a brighter and stronger future.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a family that states Zolgensma saved all of their lives, and they share their families journey through gene therapy, Also, Community Development Manager Kevin Schaefer reads from Tyler Dukes' 31 Days of SMA story. Tyler shares his experiences with living independently.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma has the potential to change the whole landscape of SMA. Also, Community Development Manager Kevin Schaefer reads from Melissa Milinovich's 31 Days of SMA story. Melissa shares her experiences as a parent who has SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 39 of the SMA News Today Podcast, host Kevin Schaefer interviews Jason Bertsch from Greenfield, Indiana. Jason and his wife Kelly have two sons, and their youngest, Luke, has SMA Type 2. Jason talks about his family, Spinraza, and a Star Wars Celebration story that makes Kevin insanely jealous.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about claiming your independence while living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how experts described improved survival and key motor milestones that were achieved with Risdiplam in SMA trials. Also, Community Development Manager Kevin Schaefer reads from a recent forum post about stress management.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how interim results from a phase 2 trial of Spinraza in infants with SMA support efficacy and safety. Also, Community Development Manager Kevin Schaefer reads from his latest column about sleep and SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Spinraza is showing long-term benefits in all SMA types. Also, Community Development Manager Kevin Schaefer talks about an initiative that SMA News Today is doing for SMA Awareness Month in August.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss an interview with AveXis where they state that Zolgensma is showing strong efficacy across SMA types. Also, Community Development Manager Kevin Schaefer talks about coping with bad days when you have SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Spinraza continues to demonstrate safety and provide improvements in SMA patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he shares tips for giving a hug to a wheelchair user with a robotic arm. ___
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss whether or not the National Institute for Health and Care Excellence, (NICE), will recommend funding of Spinraza in England’s National Health System for all SMA patients. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how he treats each day as a blessing while living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss an interview with a mom who says that her child lived through death with SMA and through life with Spinraza. Also, Community Development Manager Kevin Schaefer reads an excerpt from Brianna Albers' latest column.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma can help babies treated early, but older patients may also benefit. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he shares some of the highlights from the 2019 Cure SMA Conference.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reldesemtiv. Also, Kevin and columnist Brianna Albers share their experiences at the 2019 Cure SMA conference.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the National Center For Advancing Translational Studies, (NCATS), warns that rare diseases constitute a public health issue. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about going with the flow and living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a recent study that suggests that Spinraza is safe and effective in adults with SMA. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he recounts a negative experience with flying.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a rare case of severe SMA in India, that was partly evident by bone fractures at birth. Also, Community Development Manager Kevin Schaefer talks about his experiences at the 2019 Cure SMA conference. Cure SMA is the largest SMA nonprofit organization, and this year’s conference took place in Anaheim, California.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Risdiplam is showing promise for treating SMA Types 2 and 3. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how airline companies, and the FAA, refuse to make it easier for those of us in wheelchairs to have the ability to fly like the able-bodied.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Risdiplam improves survival and motor functions in infants with Type 1 SMA. Also, Columnist Michael Casten reflects on his daughter's ninth birthday, and how far she's come since her initial SMA diagnosis.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that states that SBMA patients are more likely to be affected by metabolic disorders, including heart and liver disease. Also, Columnist Alyssa Silva writes about how spontaneous adventures to faraway coffee shops help her celebrate the good days with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 37 of the SMA News Today Podcast, host Kevin Schaefer interviews Courtney Smith and her boyfriend Trevor Rogerson. They live in Seattle, Washington, and Courtney has SMA Type 2.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Zolgensma continues to extend survival in SMA Type 1 patients several years after dosing. Also, SMA News Today forums moderator DeAnn Runge shares her perspective with regards to how she sees SMA changing in the future, for those of us who suffer from this disease.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how SMA patients in Saskatchewan, Canada, have gained wider access to Spinraza. Also, Community Development Manager Kevin Schaefer talks about recognizing his limitations in his latest column.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a long-term trial that states how Spinraza was found to improve and restore motor function in children with late onset SMA. Also, Community Development Manager Kevin Schaefer talks about Kevan Chandler's latest book, which is in stores now. Chandler is an author and nonprofit founder, who has SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a study that suggests how high intensity training improves fitness while being safe for patients with spinal bulbar muscular atrophy (SBMA). Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses 4 tips that can make your upcoming Spinraza treatments easier.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a recent study that suggests how parents need supportive care as their children transition to wheelchairs. Also, Community Development Manager Kevin Schaefer talks about how Spinraza has affected his head and neck control in his latest column.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how some Spinraza users shared their stories in a Biogen webcast on how they went from a gut wrenching diagnosis to a wonderful drug. Also, Community Development Manager Kevin Schaefer reads from a forum topic about swimming pool lifts for people with disabilities.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 36 of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss the FDA-approval of AveXis’ drug Zolgensma, and related news stories. We also look at some of our recent columns and forum posts, and share our thoughts. Listen here, and be sure to subscribe to the podcast.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a nonprofit group is working to raise rare disease awareness in India. Also, SMA News Today forums moderator DeAnn Runge shares her perspective regarding how living with SMA has taught her the meaning of patience.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a recent mouse study that explores the underlying cause of motor neuron degeneration in SBMA. Also, Community Development Manager Kevin Schaefer talks about finding the sweet spot, when it comes to getting blood drawn and positioning in his wheelchair.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Patient Airlift Services (PALS) uplifts the spirits of rare disease patients by offering free flights. Also, Community Development Manager Kevin Schaefer talks about how his head and neck control have improved since he started receiving Spinraza.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how ZOLGENSMA is helping treated babies to breathe and sit on their own. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how his best friend inspired him to continue to improve and enrich his life.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a recent study that suggests how certain changes in bladder and the colon, may underlie gastrointestinal issues in SMA. Also, Community Development Manager Kevin Schaefer reads from his latest column about what medical advancements mean for adults with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a potential relationship that was found between early non-neuromuscular symptoms and the lack of SMN protein in SMA patients. Also, Community Development Manager Kevin Schaefer reads from a recent post in the SMA News Today forum regarding the recent FDA-approval of Avexis' Zolgensma, and we explain the key differences between this drug and Spinraza.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 35 of the SMA News Today Podcast, host Kevin Schaefer interviews Mike Blakey from Gainesville, Florida. Mike is a part-time CPA and attorney, and he has SMA Type 3."
Photo Contributed by Mike Blakey
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a videogame by the name of ACTIVE, makes it more fun for patients to monitor their motor function. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective regarding life expectancy while living with spinal muscular atrophy.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how mothers of SMA patients feel better after engaging in social and leisure activities. Also, Community Development Manager Kevin Schaefer reads from his latest column, about staying home alone when you have SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Saudi Arabian doctors need to be more aware of guidelines and new care for SMA. Also, Community Development Manager Kevin Schaefer reads from a recent post in the SMA News Today forums that describes the benefits of eye tracking technology for people with disabilities.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, reads from an article published on the SMA News Today website regarding the official approval of ZOLGENSMA as the 2nd FDA approved treatment for spinal muscular atrophy. Also, we discuss a parent survey that showed how speech generating devices provide benefits for children with SMA Type 1.
Link to article regarding FDA approval of ZOLGENSMA: https://smanewstoday.com/2019/05/24/fda-approves-zolgensma-gene-therapy-newborns-toddlers-with-any-sma-type/
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a study highlighted the difficulties of transitioning from pediatric to adult care for SMA patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he describes the challenges of acquiring an accessible hotel room.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how well Type 2 SMA patients are doing regarding motor milestones and safety concerns regarding taking Zolgensma. Also, Community Development Manager Kevin Schaefer reads from a forum topic about staying home alone when you have SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 34 of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale talk about the latest SMA news and perspectives from May 2019. Topics include clinical trial updates from the 2019 American Academy of Neurology (AAN) Annual Meeting, as well as some of our recent forum posts and columns.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Protease Inhibitors show potential to treat SMA by raising SMN levels. Also, SMA News Today forums moderator DeAnn Runge shares her perspective regarding not only physical strength, but inner strength as well.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the survival rate is up for adults and children with neuromuscular disorders. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how showing respect and being kind, can improve not only your own life, but the lives of others.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses a study that finds how Leuprorelin Acetate may reduce swallowing dysfunctions in SBMA patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he describes how having SMA has sparked unique interactions with people.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the MDA conference brought neuromuscular disease experts together to share a new era in treatments. Also, Community Development Manager Kevin Schaefer talks about what questions adults with SMA should ask in regards to Zolgensma.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how better screening techniques have improved advancements in SMA treatments. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective regarding knowing your limitations while living with SMA, and not letting these limitations dictate how you live.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Brexit could have real effects for UK rare disease patients. Also, Community Development Manager Kevin Schaefer reads from his latest column, in which he talks about how he’s come to love physical therapy.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 33 of the SMA News Today Podcast, host Kevin Schaefer interviews John Scurto from Boca Raton, Florida. John is a senior at Florida Atlantic University, studying business management, and he has SMA Type II.”
Photo Contributed by John Scurto
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Valproic Acid improves gross motor function, but not respiratory function in SMA patients. Also, Community Development Manager Kevin Schaefer introduces a forum dedicated to Zolgensma, a gene therapy designed to treat SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Cure SMA and PPMD join Prometheus Research in a data collection partnership. Also, Community Development Manager Kevin Schaefer shares tips for parents about finding the right aid for their child with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how skin lesions in an infant with SMA Type 1, were cured after their Spinraza treatment. Also, Community Development Manager Kevin Schaefer shares tips for parents about finding the right aid for their child with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how SMA newborn screening is expanding as more states enact mandatory screening. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how important it is to remember how our decisions affect those who live around us.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss a study that explains why SMA patients don’t need higher radiation doses in CT-guided Spinraza injections. Also, Community Editor Kevin Schaefer introduces a new column by Katie Napiwocki called “A Wildflower in the Wheelderness.” Kevin reads an excerpt from this column, and invites listeners to check it out on SMA News Today.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how moral dilemmas complicate treatment of rare diseases. Also, Community Editor Kevin Schaefer reads from his latest column, in which he describes making big occasions inclusive for people with disabilities.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a new endurance test can measure fatigue in types 2, 3, & 4 SMA patients. Also, SMA News Today forums moderator DeAnn Runge shares her perspective on accomplishing your goals while living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the British MP is pushing to make Spinraza available for SMA patients. Also, Community Editor Kevin Schaefer reads from his latest column, in which he describes how SMA has affected the way he travels and socializes.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a phase 2 trial is planned for SRK-015 in SMA patients after positive phase 1 data was reported. Also, Community Editor Kevin Schaefer talks about trying on-land physical therapy, and how it compares to his usual aquatic therapy.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 32 of the SMA News Today Podcast, Community Editor Kevin Schaefer and Multichannel Content Director Michael Morale talk about the top news stories from April 2019. This episode covers newborn screenings, an experimental video game that could test the motor function in people with SMA, and some of our recent columns and forum posts.
Listen to the episode here, and be sure to subscribe to the SMA News Today Podcast.
We discuss how Spinraza and ZOLGENSMA both dramatically improve the lives of kids with SMA. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective on accomplishing your goals while living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how scientists have created a new method to calculate the number of SMN1 copies and identify SMA carriers. Also, Community Editor Kevin Schaefer talks about his spinal fusion surgery in 2005, and why this is an important procedure for many people who have SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how parents want better communications with health care staff regarding their children with SMA. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks about how absurd humor has helped him cope with the challenges of SMA over the years.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 31 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Angela and Justin Titcombe from Houston, Texas. Angela is a schoolteacher who has SMA type 2, and she and Justin got married in June of 2018. During this interview, the couple shares their story, and talks about what it’s like to be an interabled couple in today’s society.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how organizers expect 1,200 people to attend the Rare Disease Conference known as WODC 2019 in April. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how physical therapy has improved his recovery efforts when he’s sick.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how China has approved Spinraza for most SMA patients. Also, Community Editor Kevin Schaefer reads from his review of a book about inter-abled relationships by Ben Mattlin. Mattlin is a Los Angeles-based writer with SMA Type 2, and this review is available on our main website and on our forums.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how the FDA is revising the draft guidelines on developing treatments for rare diseases. Also, Community Editor Kevin Schaefer reads from his latest column, in which he addresses a recent episode of “Dr. Phil” that featured an inter-abled couple.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how a new gene therapy approach is able to repair mutations causing SMA, and other inherited diseases. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how he copes with getting older.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the NIH Rare Disease Day highlights joint networks advancing array of research. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks about how having personal aides with him in school prepared him for having caregivers as an adult.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how parents believe healthcare for children with SMA needs to be improved. Also, SMA News Today forums moderator DeAnn Runge, shares her perspective on living with a permanent feeding tube while living with SMA.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
In episode 30 of the SMA News Today Podcast, Kevin Schaefer and Michael Morale discuss the latest news regarding Spinraza (nusinersen) and Zolgensma (AVXS-101). Both of these drugs are designed to treat SMA.
Also, Kevin and Michael take a look at some of the trending discussion topics on the SMA News Today forums, as well as a recent column by Brianna Albers.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how SMA patients in Ireland and the UK are demanding reimbursement for the cost of Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how humor has played a key role in his life.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the developers of Spinraza are disappointed with a Canadian agency’s updated recommendation. Also, Community Editor Kevin Schaefer reads from his latest column, in which he talks about SMA as a part of his identity.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how a 3-D cell model mimics SMA motor neurons, and how this is a good platform for testing possible therapies. Also, Community Editor Kevin Schaefer invites listeners to join the SMA News Today forums, and explains how to sign up.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how Vienna is scheduled to host the RARE2019 meeting on rare diseases. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses the results of his 8th Spinraza injection that occurred on Monday, March 11, 2019.
Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com
We discuss how the cost effectiveness of Spinraza exceeds Swedish willingness to pay threshold. Also, Community Editor Kevin Schaefer reads from one of his forum posts, in which he shares advice about being a freelance writer with SMA.