WeHaveAVoice: Recent Episodes
WeHaveAVoice
WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount!
Visit: www.WeHaveAFace.org/Radio for more information.
AMT-130 was sold as the breakthrough Huntington’s families have waited generations for — a one-shot gene therapy that “changes everything.” Researchers celebrated, headlines exploded, and desperate families finally believed they might be saved. But behind the hype, the FDA slammed the brakes, a leading scientist called out exaggerated claims, and truth collided with marketing. This episode exposes the divide: real science vs. false hope. We dig into the hype machine, the backlash, and why Huntington’s families are being pushed into a letter-writing campaign to fix a mess they never deserved. If you’re tired of miracles being promised and ripped away, this is the show you’ve been waiting for.
We Have A Voice Radio dives into the AMT-130 news for Huntington’s—what this one-time, brain-delivered gene therapy is, what the reported “75% slowdown” really means, what’s next for approval, and the hard truths on access and cost.
"The Blue Within" dives into the surprising potential of methylene blue—a simple dye with extraordinary promise—in the fight against Huntington’s disease and other neurodegenerative disorders. Blending science, human stories, and community voices, this episode asks: could one drop of blue hold the key to clarity, hope, and change?
The modern phenomena of Doomscrolling and its affect on Huntington's Disease. A short monologue.
A short monologue concerning the possible use of nicotine patches for Huntington's Disease.
44% of men die prematurely in Canada. Most likely higher in the US. But what about men with Huntington's Disease?
Kevin uses AI to analyze all information to get a picture of what may happen in regards to HD research in light of possible policy changes due to a new U.S. administration. This is not a political post.
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.
Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community
Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25
Kevin talks about memories of his wife Sheila and how it's important to nurture friendships
Jen and Kevin chat about disappointments over the years in the Huntington's Disease community
Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.
Dr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease. To watch this episode with video, please go to https://www.youtube.com/watch?v=ZJs8EHEPMag
Louise Vetter (President and CEO of HDSA) underscores her support for the initiative to change the current diagnostic criteria and introduces the new Huntington's disease support platform - #PatientsLikeMe
Erin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HD
Please listen to James Valvano interview Jennifer Simpson HDSA on the HDParityAct! It's time to pass the HD Parity Act and remove the two-year waiting period for Medicare and SSDI! We must communicate the dire need of these medical supports and services to the US Congress!
WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLoved
On May 11, 2021, James Valvano will interview Jennifer Simpson (HDSA Assistant Director, Youth & Community Services), to discuss the HD Parity Act! ALS just recently made drastic changes to the description of what ALS is. They furthered their efforts by having unanimous consent by Congress to pass their bill for patients to obtain immediate access to benefits. The HDSA wishes to have the HD Parity Act pass by unanimous consent by Congress for individuals with Huntington's disease to receive the same benefits as our friends with ALS. Act today! - Join the HD Acvocacy Act: https://cqrcengage.com/hdsa/Caucus
Kas Rodriguez talks about her experience with JHD in regards to her 8 year old son Daniel.
Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. A current anonymous survey is available for parents and guardians to help Dr. Finn with her research. www.WeHaveAFace.org/survey2
Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence. Dr. Herwig Lange of the George Huntington Institute of Germany joins the conversation. Topics: What is a Center of Excellence (CoE)? How does a facility become a Center of Excellence? Should doctors diagnose patients earlier so a treatment plan can be put in place? How can environmental factors affect Huntington's disease patients regarding the onset of symptoms? Update from Louise Vetter (CEO/President) of the HDSA regarding Centers of Excellence using telemedicine during these trying times with COVID-19.
Jen gives a public service announcement concerning our new virtual support group on Mondays.
Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.
Kevin Jess speaks with Jen Almeida from the Connecticut Chapter of WeHaveAFace about "Blessings for HD and JHD Warriors
Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group
Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.
WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.
WeHaveAVoice Radio! German Doctor: Dr. Ansgar Klimke - New approach for hydroxychloroquine in aerosol form for #COVID19 #Coronavirus #Spreaker #CDC #WHO
WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDisease
Louise Vetter, President, and CEO of the Huntington's Disease Society of America (HDSA) speaks with James Valvano about the HD Trial Finder. We must broaden awareness of studies and trials for our Huntington's disease population.
Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHD
WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.
Jimmy Pollard talks about his experiences and imparts lessons to apply to HD caregiving.
Karen Marais talks about her relationship with her partner Chris who has Huntington's Disease
Leanne and Kevin speak with Sarah Warehime, a beginner as a suicide prevention advocate and Dr. Herwig Lange. We talk about a range of topics including suicide prevention and how to get involved.
"Kay" talks about her relationship with her best friend who has Huntington's Disease and how her mood swings are affecting important decisions she has to make.
Kevin Jess talks with his daughter about her recent experience with testing for Huntington's Disease
James Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.
Kevin and James talk about events and issues of the day relating to HD advocacy and upcoming events
WeHaveaFace news and updates concerning fundraising events from around the world as well as TEVA Pharmaceutical grant updates.
James Valvano speaks candidly with Kevin about his journey to climb mountains for Huntington's Disease
Kevin and Leanne talk with Dr. Bonnie Hennig-Trestman, Leaha Mattinson and Dr. Herwig Lange about the importance of knowing when and how to talk to your children about Huntington’s Disease offering important strategies for best outcomes.
Leaha Mattinson is a change management specialist, life coach, speaker, and author who “walks her talk” in a truly extraordinary way. In 2008 she learned she would someday inherit Huntington’s disease, a genetic, neurological, terminal illness that affects the brain and progressively shuts down the mind and body. It was a devastating diagnosis—yet Leaha realized that to be true to the message she shares with clients, she must live her life consciously with enthusiasm, grace, and gratitude.
She developed her own wellness protocol to halt the onset of the disease by focusing on nutrition, exercise, restorative sleep, mindfulness, and a pervasive sense of reverence for life. But the most crucial attribute of Leaha’s success is her mindset: She embraces passion, happiness, and possibility, and turns all negativity into positive life experiences. She attributes her work ethic and values to the example set by her beloved parents and a childhood growing up on a farm where she was immersed in the rhythms of nature.
Her mission is to share these valuable insights with others. As a thought coach, she guides her clients toward self-improvement by helping them resolve underlying fears, interrupt bad habits, and break through barriers in order to achieve their goals. She is also a speaker, addressing topics such as facing chronic or terminal illness, finding the Wellness Within yourself, stress management, finding courage, discovering purpose and living in uncertainty.
Leaha is a wellness advocate, she hosts the Leaha Mattinson Show and Master Your Life with Cohost Dr. Howard Rankin on Internet radio, which reaches a global audience. They are aimed at people who are passionate about overcoming obstacles, wellness, personal growth, and self-improvement—those who are eager to bring real change to the way they live and find meaning in a world that’s often brutally stressful and disconnected.
Silver Linings: How to Be Unstoppable in the Face of a Terminal Illness is Leaha’s first book. It’s companion guide Silver Linings Course Correction Guide: Your Nurturing Journey Starts Here takes the reader further into self-discovery and wellness through their own deep contemplation.
She is a mother and grandmother who lives in Alberta, Canada. To learn more about Leaha, visit her website LeahaMattinson.com
Listen to #HuntingtonsDisease patient, John Howard as he reads his poetry. @iHeartRadio @Spreaker
Unser Beratender Arzt Dr. Herwig Lange wendet sich an unsere Patienten und Familien in deutscher Sprache. Es ist wichtig, dass unsere Leidensgenossen an WeHaveAVoice-Radio teilnehmen. Wir sind nicht allein. Wir werden Sie wissen lassen, wenn Dr. Herwig Lange eine Show in deutsch geben wird. Vielen Dank!
WeHaveAFace.org has grown substantially over the last year. We are proud to have nonprofit organizations in the USA, Canada, and the United Kingdom. Tonight, we will talk to with the team of WeHaveAFace Canada!
A short LIVE update: WeHaveAFace.org Canada, "Blue and Purple" - Poetry Project, and the "WeHaveAFace" Magazine!
Tonight Dr. Samuel Frank of the Huntington Study Group (HSG) discusses TEVA's new drug - AUSTEDO for the treatment of chorea in Huntington's disease. There will be questions from the community! #YouAreLoved
WeHaveAVoice LIVE Updated! LIVE UPDATE! TEVA Pharmaceuticals released HD Drug! Poetry Project - Volume 2! 2nd Annual WeHaveAFace Convention!
Stay tuned for the Genefo HD Webinar which will take place on April 6, 2017 with our very own Dr. Herwig Lange of the George Huntington Institute!
WeHaveAFace travels to California - editing "The Warriors" the Juvenile Huntington's Disease documentary.
Today Dr. Herwig Lange of the George Huntington Institute will be answering questions about dental care and HD/JHD. We thank Dr. Lange for his ongoing support!
Updates about our 2nd Annual Convention - June 10, 2017, and our next volume of our Blue and Purple Poetry Book. #YouAreLoved
WeHaveAFace.org Global HUBS - USA, UK, and Canada!
Stay tuned for more information about these HUBS!
WeHaveAVoice LIVE Radio! Tonight: Let’s Talk About Cannabis Oils – Cindy Moore and Traci Pratt discuss their children's experiences using cannabis oils for Juvenile Huntington's Disease.
WeHaveAVoice - Thursday, February 9, 2017!
Let’s Talk About Cannabis Oils – Cindy Moore and Traci Pratt!
We will hear from these amazing JHD Mothers and the miracle of Cannabis Oils which have helped their children! Stay tuned and join the conversation! #YouAreLoved
WeHaveAVoice Radio! Tonight with Katie Jackson President of Help 4 HD International! We need the help from our USA #HuntingtonsDisease and #JuvenileHuntingtonsDisease community! The U.S. Food and Drug Administration must listen! We need their support and understanding regarding trials and studies for this disease! Take action! #YouAreLoved
WeHaveAFace looks forward to releasing a suite of multimedia educational programs for our International Huntington's and Juvenile Huntington's community! Tonight is a short overview! More to come in the near future! #YouAreLoved
WeHaveAVoice Radio with Dr. Herwig Lange from the George Huntington Institute in Germany! Dr. Lange has agreed to join us to discuss the topic of CAG.
WeHaveAFace.org Global HUBS is pleased to announce that "The Huntington's Poetry Project: Blue and Purple" Volume 1 is published! All poems were submitted by the Huntington's and Juvenile Huntington's disease community! Get your copy today! www.WeHaveAFace.org/poetryproject #YouAreLoved
Stay tuned for this Thursday's LIVE show! We will be discussing the poetry project and information about the publication date! We thank everyone who sent us their poems and we look forward to publishing the 1st volume very soon!
Happy New Year! We are excited to announce our newest edition to our programs: "WeHaveAFace" Magazine!
WeHaveAVoice LIVE! We hope all of you had a great 2016! Tonight we have our last LIVE show for 2016! Tonight we are taking questions from the community! #YouAreLoved
WeHaveAVoice will air it's last show for 2016 on Thursday, December 29th! We will be taking questions from the community! We look forward to broadcasting many shows in 2017! #YouAreLoved
Good afternoon everyone! 2017 is right around the corner and WeHaveAFace.org Globla HUBS is looking forward to some great publications and awareness events! Take a listen to today's show and hear what's coming next! #YouAreLoved
WeHaveAFace.org looks forward to 2017 and our plan to better the lives of our Huntington's and Juvenile Huntington's disease community. For more information about our Global HUBS, visit: www.WeHaveAFace.org/HUBS #YouAreLoved
WeHaveAVoice Radio Show!
Stay tuned as we discuss our Global HUBS on Thursday, December 15, 2016! #YouAreLoved
WeHaveAFace.org Global HUBS will be attending the World Stem Cell Summit - December 7, 2016. We look forward to this amazing event! On December 10th we will hold our 2nd Annual Walk for HD/JHD - "Pound the Pavement" - Visit: www.WeHaveAFace.org/SaintCloudWalk for more information! #YouAreLoved
WeHaveAFVoice - Tonight's LIVE show will discuss "Behavior with Huntington's and Juvenile Huntington's Disease" with our great panel of guests! Tonight's topics: Aggression, Anxiety, and Altered Sexuality with HD and JHD!
WeHaveAVoice LIVE Broadcast o December 1, 2017
Thursday's topic will be "Behavior and Huntington's and Juvenile Huntington's Disease" - We look forward to seeing you in the chatroom! #YouAreLoved
WeHaveAFace Global HUBS - LIVE Thanksgiving Update! We look forward to our upcoming events here in Florida and hope that you can join us! #YouAreLoved http://www.WeHaveAFace.org/events
Tonight is a quick follow up show from our amazing trip to Brockville, Ontario Canada! "No Time To Spare" 3rd Annual Bowling Tournament for Juvenile Huntington's Disease, honoring Erin Wade!
WeHaveAVoice Radio - Tonight we are drawing the names of the winners of the awesome MyID Medical Alert products! We thank you for tuning in! #YouAreLoved
WeHaveAFace is excited for our upcoming events! Greene's Quality Construction Inc. Golf Classic in Jacksonville, Florida. Then, we are off to Brockville, Canada for the 3rd Annual JHD Bowling Event "No Time To Spare" - Visit: www.WeHaveAFace.org/events for more information! #YouAreLoved
WeHaveAFace - England Premiere of "The Huntington's Disease Project: Removing the Mask" documentary. We are LIVE from Southampton England for a quick LIVE Broadcast! #YouAreLoved
Tonight Cindy Moore joins us from Brockville, Ontario Canada to give us an update on the upcoming JHD Bowling Tournament on November 11, 2016. We look forward to another amazing event with our friends in Canada! Stay Tuned!
Today we travel to England for the premiere of "The Huntington's Disease Project: Removing the Mask" - October 23rd in Southampton at The Solent University. Stay tuned for a LIVE update following the event! We are pleased to announce our upcoming events! Visit: www.WeHaveAFace.org/events for more information! #YouAreLoved
The Premiere of "The Huntington's Disease Project: Removing the Mask" at The Solent University of Southampton on October 23, 2016. Tonight we will discuss the documentary and get LIVE updates from June Brown and James Walters from England! Please visit: www.WeHaveAFace.org/UK for additional information about this upcoming event!
Stay tuned as we go LIVE on Thursday, October 13th at 7PM (EST) to discuss our upcoming premiere of "The Huntington's Disease Project: Removing the Mask" Documentary in Southampton, England! I will be joined by June Brown and James Walters...stay tuned!
Hurricane Matthew is slowly making its way up the coast! We are coming to you LIVE from Saint Cloud, Florida! James Valvano and Mary Etta Robertson.
On Thursday, October 6th, we will have another LIVE Broadcast regarding HD/JHD events within the community! Stay tuned...we will be discussing events here in the USA, and in England! #YouAreLoved
WeHaveAVoice" Radio: Families torn apart by HD/JHD" - Joining us for this LIVE show will be: Kevin Jess, June Brown, Sarah Parker Foster, Clarice Miller Deshalamar. #YouAreLoved
This is a LIVE update regarding our Thursday, September 29th show at 7PM (EST). Show Topic: "Families torn apart by Huntington's and Juvenile Huntington's disease." - Joining us for this LIVE show will be: Kevin Jess, June Brown, Sarah Parker Foster, Clarice Miller Deshalamar! We look forward to hearing from you! #YouAreLoved
http://www.wehaveaface.org/whaf-blog
TONIGHT! LIVE WeHaveAVoice Radio Show! "Itching/Scratching" with Huntington's and Juvenile Huntington's Disease - Joining us will be Dr. Herwig Walter Lange and Dr. Peg Nopoulos!
YouAreLoved
WeHaveAVoice - LIVE UPDATE!
We look forward to having Dr. Herwig Lange and Dr. Peg Nopoulos join us on Thrusday, September 22, 2016 @ 7PM (EST) to discuss this important topic! Visit: www.WeHaveAFace.org/Radio and send in your questions/comments!
"All About CAG" - LIVE with Dr. Herwig Lange from The George Huntington Institute of Germany! This is a much needed conversation regarding a true negative and a positive test result for Huntington's and Juvenile Huntington's disease. The discussion will include questions from the international community and answered by Dr. Herwig Lange.
On August 18th at 7PM (EST), Dr. Herwig Lange from the George Huntington Institute joins us for a LIVE broadcast - All About CAG! Too many individuals within the Huntington's and Juvenile Huntington's community have questions and concerns regarding information pertaining to CAG. Stay tuned as we tackle this subject tomorrow night!
LIVE from Brockville, Ontario Canada!
Tonight we celebrate the 1st Canadian walk for Juvenile Huntington's Disease! We are LIVE with Cindy Moore, Erin Moore, Dr. Kyle Fink, and Dr. Jan Nolta! Fundraiser Show! #YouAreLoved
WeHaveAFace.org Global HUBS - Awareness events for Huntingotn's and Juvenile Huntington's disease! Today we are updating the community regarding some wonderful events we have scheduled for August and October 2016! For additional information: www.WeHaveAFace.org/Events
Our brother John gained his Huntington’s wings on July 17, 2016 and became an HD Angel. On behalf of my entire family, we thank you from the bottom of our hearts for your love, support, and strength during this time. It is impossible to reply to all of your wonderful and comforting comments, but we know they are there…we know that we have your love and support. We will continue the mission to broaden awareness of Huntington's and Juvenile Huntington's disease. #YouAreloved
News Update: Today we will briefly discuss some great news about our JHD film and an update on the premiere of our documentary in the UK! It is time to broaden awareness of Huntington's and Juvenile Huntington's disease! #YouAreLoved
Tonight's WeHaveAVoice Radio Show - What's Next? WeHaveAFace Global Events!
Juvenile Huntington's Disease Canadian Walk
Juvenile Huntington's Disease Global Documentary
*Premiere of "The Huntington's Disease Project" documentary in the UK
May is HD/JHD Awareness Month! Tonight our special guests will talk about their loved ones with Juvenile Huntington's Disease. We are so blessed to have Dr. Kyle Fink, CM Moore, Alison Believingforacure Nye, Jan Todd, and Dr. Herwig Lang join us for a special Juvenile Huntington's Disease Radio Show!
Please visit: http://www.spreaker.com/user/wehaveaface
WeHaveAFace.org and HDCare.org have joined efforts to provide a low-cost Medical ID Alert Bracelet - MyID! We are official partners of ENDEVR creator of these amazing safety alerts! As partners of ENDEVR, the international Huntington's community can receive this discount only through the links below. These bracelets will facilitate a rapid response from EMS, Police, Fire Rescue workers, and the general public, in the case of an emergency! Unlike other bracelets or alerts that come with inscribed information, these MyID! Medical Alerts come with an electronic profile that can be updated on the fly with current information! No need to change anything on the bracelet! Our special guest is Daniel Medina - Director of Community Outreach of HDCare.org. We are excited to be introducing this product to our international peers! For more information, visit: http://www.wehaveaface.org/#!id/c14tp
WeHaveAFace.org and HDCare.org have joined efforts to provide a low-cost Medical ID Alert Bracelet - MyID! We are official partners of ENDEVR creator of these amazing safety alerts! As partners of ENDEVR, the international Huntington's community can receive this discount only through the links below. These bracelets will facilitate a rapid response from EMS, Police, Fire Rescue workers, and the general public, in the case of an emergency! Unlike other bracelets or alerts that come with inscribed information, these MyID! Medical Alerts come with an electronic profile that can be updated on the fly with current information! No need to change anything on the bracelet! Our special guest is Daniel Medina - Director of Community Outreach of HDCare.org. We are excited to be introducing this product to our international peers! For more information, visit: http://www.wehaveaface.org/#!id/c14tp
LIVE Pre-Show! Guelph, Ontario Canada
Tonight we will discuss the premiere of our documentary - "The Huntington's Disease Project: Removing the Mask" here in Canada!
Bernard Siegel is the founder and co-chair of a series of global conferences, including the annual World Stem Cell Summit. As a recognized policy expert on stem cell research, regenerative medicine, Mr. Siegel works with the world's leading stem cell researchers and advocates. Today we will be discussing the REGROW act of 2016! For additional information about the REGROW act of 2016, please visit: http://www.celltherapynow.org
Tonight's show we will discuss home healthcare, nursing home care, and sexuality in Huntington's disease. Our guests: Mary Etta Robertson, Sarah Parker Foster, and Marie Clay. Sensitive subject matter is important to discuss to further educate our international Huntington's peers and caregivers. It is also necessary to remove stigmas regarding what we experience in our community. We thank you for listening!
LIVE this Thursday night at 7PM (EST) with special guests - Mary Etta Robertson, Sarah Parker Foster, and Marie Salvaggio Clay! Topics: Home Healthcare / Nursing Care, and Sexuality and Huntington's disease! As will all of our shows, WeHaveAVoice remains focused on Huntington's disease patients, patient advocates, and caregivers. It is imperative that we give a "voice" to necessary topics that we experience each day in the international Huntington's community. Stay tuned!
Stay tuned for our LIVE March 31, 2016 Radio Show!
Our guests: Mary Etta Robertson, Sarah Parker Foster, and Marie Clay. Sensitive subject matter is important to discuss to further educate our international Huntington's peers and caregivers. It is also necessary to remove stigmas regarding what we experience in our community. We thank you for listening!
LIVE from: "No Time To Spare!" WeHaveAVoice - 1st Community Bowling Tournament for Huntington's and Juvenile Huntington's Disease! Orange Bowl Lanes in Kissimmee, Florida! Engaging the Huntington's disease community is part of our mission!
March 10, 2016 7PM (EST): Special guest Mary Etta Robertson from North Carolina! Mary has been a loving wife and caregiver of her husband Paul Robertson for over fifteen years. Paul gained his Huntington's wings recently, and we will hear Mary's story of strength, love, and hope. The international Huntington's community has followed Mary and Paul on Facebook for quite some time. It is now time for Mary to tell their love-story, and provide hope for the community.
On March 10th at 7PM (EST), we will air our first LIVE show. The incredible Mary Etta Robertson (from North Carolina) will be our first guest of the year. Mary will share her inspirational story of love...strength...and hope with our Huntington's disease community. Mary has been a loving wife and caregiver of her husband Paul Robertson for over fifteen years. Paul gained his Huntington's wings just recently. The international Huntington's community has followed Mary and Paul on Facebook for quite some time. It is now time for Mary to tell their love-story, and provide hope for the community.