FSHD Society Radio: Recent Episodes
FSH Society Radio
This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the nonprofit FSH Society.
Kathy Chase has a sense of humor - about life and her husband Larry’s FSHD diagnosis. In this episode, Kathy joins Tim for a candid conversation about how FSHD has affected and strengthened her marriage. Kathy’s blogs are eloquent as is she as she provides insight into her experience as a spouse, carepartner, and someone with a deep belief in “the beauty that can still be found in difficult seasons.” FSHD doesn’t have to mean the end; it can also signal so many new beginnings.
Read Kathy’s work and follow her blog: https://kathychase2.substack.com/subscribe?next=https%3A%2F%2Fkathychase2.substack.com%2F&just_signed_up=true
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week, Chris Carrino returns to FSHD Straight Talk for a conversation about inspiration. Recently awarded the Curty Gowdy Media Award and entered into the Naismith Basketball Hall of Fame, Carrino discusses feeling humbled and reacting to how sports announcing has both inspired him and allowed him to inspire others.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Happy World FSHD Day 🍊🧡 On June 20th, folks living with FSHD and their communities come together to raise awareness about FacioScapuloHumeral Muscular Dystrophy. June 20th is a day for sharing stories and information about this rare, relentlessly progressing disease. In this year's World FSHD Day Special Episode, Tim speaks with Raj Badiani of FSHD UK and Neil Camarta of FSHD Canada. Raj and Neil discuss the significance of World FSHD Day and share details about events and awareness campaigns in their countries. From social media campaigns and revamped websites to painting Canada orange and free beers, this episode is a testament to how patient empowerment, community connection, and hope, have created and sustained a powerful movement to cure FSHD. Many thanks to Raj and Neil for joining us! -------------------------------------------------------------------------------------FSHD UK
Visit their new website and learn about their important work to educate clinicians, create a robust clinical trial and care network across the UK, and foster an international, collaborative, FSHD community.
https://fshduk.com/
Check out their social media for the June Countdown to World FSHD: a daily campaign of informational posts!
- Facebook: @FSHDUK
- Instagram: @fshd.uk
- X: @FSHDUKgroup
-------------------------------------------------------------------------------------FSHD Canada
Visit their website to learn more about FSHD Canada's work to increase clinical trial opportunities and improve quality of care for Canadians living with FSHD.
https://fshd.ca/
- Facebook: @FSHDCanadaFoundation
- Instagram: @fshdcanada
Check out the Painting Canada Orange reel created by Genna, the Ontario-based grad student Neil mentioned. Genna's worked very hard to support the lighting of buildings and landmarks in all of Canada's provinces.
Instagram Reel: https://www.instagram.com/reel/DZGDr01MoNk/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA== -------------------------------------------------------------------------------------Learn more about the history of World FSHD Day, Marco and Sandro Biviano, and this growing international movement!
- FSHD Society Blog
Learn more about everything happening across the globe in 2026:* World FSHD Alliance Live Blog * FSHD Society Live Blog
-------------------------------------------------------------------------------------🍊🧡Double Your Impact 🍊🧡
Russell has FSHD. Selina fights alongside him. This World FSHD Day, they're matching every gift you make—dollar for dollar—because they know what's at stake and they believe we can make a difference. Join them. -------------------------------------------------------------------------------------No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week Lexi Levine returns to the podcast accompanied by Kate, an adaptive crew athlete and subject of Lexi’s latest documentary film “Against the Current: Kate’s Fight for Inclusion.” Learn about crew (as a sport), Kate’s role as coxswain, living with a disability in Boston, and Lexi losing her drone in the Charles. In addition to the film, Lexi and Kate discuss their experiences living with FSHD, Lexi’s love of making films, and Kate’s approach to handling “The Stare” from able-bodied folks. A phenomenal conversation about an important film.
Watch Against the Current on YouTube: https://www.youtube.com/watch?v=Akal09o1Hfw&t=21s
Dir. Lexi Levine neé Pappas, 2025
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Veronika Hahn, like many in the FSHD community, is a life-long athlete who refuses to let FSHD steal her joy. In this episode, Hahn discusses her passion for extreme, endurance athletics including the Braveheart Run, Spartan Sports, and even training for her job as an Anesthesiologist. From her dedicated mindset to the details of her recent competition, Hahn discusses her perspective on life with FSHD: we have to live our lives with it because it’s always there, but it is NOT a given that FSHD will take away all your abilities or any specific abilities.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In our first NPR-style Tiny Desk Concert, Gracie Caggiano joins Tim to perform two of her songs and discuss life as a singer-songwriter living with FSHD. Based in Kansas City, Caggiano’s vocals are ethereal and haunting, her guitar tuned alternatively, every aspect of her process embodying her disability. In addition to adapting her singing and playing to the ways FSHD has changed her body, Caggiano pushes venues in her area to be more inclusive, as concert venues rarely provide ramps and other accommodations for attendees or performers. From hopes for a chance to tour, to the adaptable beauty and vulnerability of each performance, this interview with Gracie is not one to skip.
This episode opens with “Dust” and also features “Petal” written and performed by Gracie Caggiano with videos shot by her partner.
Catch Gracie performing live at Sk8bar, recordBar, and Manor Fest. Listen to her music on Spotify, Soundcloud, and Bandcamp, and follow her on Instagram.
- Website: https://www.graciecaggiano.com/
- Instagram: @graciecaggiano
- Bandcamp: https://graciecaggiano.bandcamp.com/album/i-cant-be-anything-but-human
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week, Ryan Olson, a mechanic turned web designer and programmer, joins Tim for a nuanced discussion about life after diagnosis, finding community support, and maintaining your masculinity as your muscles deteriorate. Both men discuss their career shifts from physical to less physical jobs and how this affected their ability to relate to other men and their own “manliness.” Reflective, Ryan discusses how faith helped him overcome isolation, body and masculinity issues, and inspired his recent shift to app design. As Ryan learned through his faith, “Set your face like flint,” remain strong emotionally, but allow your masculinity to soften, as it creates room for others.
Connect with Ryan on Instagram: @heythatryan
Check out his Linktree: https://linktr.ee/thatryan
Learn more and join the waiting list for Flint: an app designed to help Christian men build daily discipline. Flint is a daily mission briefing — not a devotional app. Scripture. Consistency. Covenant. Built to forge the man you're called to be.
Website: https://thatryan.com/apps/flint/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Introducing the High 5 Challenge, an awareness and fundraising campaign created and led by folks living with facioscapulohumeral muscular dystrophy (FSHD). The campaign seeks to increase awareness of FSHD’s existence and it effect on muscles, specifically, the inability to raise your arm to give a high five.
In this episode, Tim meets with challenge founder Jack Gerblick to talk about the idea behind the challenge and how to participate. Jack and Tim are joined by Nick Logan, an actor known for Boots (Netflix) and the challenge’s greatest hype man as Nick raises awareness and funds to cure FSHD, which affects his mother Martha. Inspired? Join the FSHD High 5 Challenge via the steps below!
How to Participate
5 steps is all it takes to fundraise and raise awareness about FSHD. Will you join us? 1. Donate today: $5, $15, $50
2. Post to social media: #HighFiveChallenge
3. Tag 5 friends in your post.
4. Include the donation link in your post.
5. Like and share posts from fellow High 5 participants!
Donation Link: www.fshdsociety.org/high5
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Justin aka TurfTank returns to the podcast for an engaging conversation about adaptive sports and maintaining your athletic passions as FSHD progresses. A life-long golfer and former Course Superintendent, Justin shares the story of his return to golf via adaptive sports, after FSHD took him, temporarily, off the course. Justin also discusses starting The TurfTank Foundation to help fund research into FSHD and additional forms of muscular dystrophy.
- Learn more about The TurfTank Foundation: https://theturftankfoundation.org/about-us/
- Learn more about US Disability & Adaptive Golf (USDGA): https://www.usdgagolf.org/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Almost 1 year to date, Art Abrams went from podcast listener to podcast guest, BetterLife FSHD Ambassador, and Leader of the new Iowa Chapter. In this episode, Tim and Art discuss life after diagnosis, workshopping how to tell folks, and the importance of finding and creating community support. For Art, lonliness constitutes one of the hardest parts of FSHD, inspiring him to make sure no one ever faces FSHD alone. This heartfelt, artful episode is not one to miss.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week we’re sharing a remastered version of an episode from 2022 featuring Claire Szabo-Casella, author of The Red Scooter Diaries and start of the short documentary film of the same name. During this phenomenal conversation, Claire and Lou discuss their efforts to create more accessible spaces in AZ to increase quality of life for folks with FSHD and additional disabilities. Claire and Lou discuss how they met, the vulnerability and trust required for an inter-abled relationship, and how to make sure you always keep growing and exploring.
You can watch The Red Scooter Diaries here: https://www.youtube.com/@redscooterdiaries
In 2024, Lou passed. He is greatly missed by Claire and their Arizona FSHD Community.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Tim kicks off 2026 by interviewing Jessica Ryley Hammond, a counselor running for Harford County Council. A lifelong athlete and horse-rider, Jessica was inspired to run for County Council because her rural community expanded so quickly, the infrastructure couldn’t keep up. In addition to discussing how FSHD affected her ability to ride, Jessica touches on how FSHD impacts her ability to climb hilly neighborhoods and the useful ability to hold a stone-face. We look forward to tracking Jessica’s campaign with the primary in June 2026.
Learn more about Jessica’s platform on her campaign Facebook page.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In our first ever Ask Me Anything (AMA) episode, Tim hosts a panel of FSHD experts to answer questions submitted by you! Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions about how to effectively describe pain to your care providers, how AI is advancing or assisting FSHD research and drug development, and more. Everyone experiences FSHD differently, and we learn the most, when we come together.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim for a fascinating episode with Carme Farré, CEO/Founder of FaceToned. From a young age, Carme found herself fascinated with yoga, pilates, and holitics health and wellness practice. She comes from a family where multiple members live with FSHD and was surprised that her career provided tools to help her family, and, eventually herself. Recently diagnosed, Carme is a passionate advocate for providing natural structure and support for muscle groups affected by FSHD, with the added side effect of laughter and improved self-image. This episode is a phenomenal conversation about how intentionally moving your tiny muscles can absolutely make a difference.
What workouts or fitness practices have helped you manage your FSHD? Tim would love to hear from you!
FaceToned was founded in 2014 with a mission of supporting women through wellness practices, increased confidence, and graceful aging. FaceToned combines elements of yoga, pilates, and physical therapy to help strengthen, rehab, and support muscles in the face and neck.
- Website: https://facetoned.com/
- FaceToned Instagram: https://www.instagram.com/Face.Toned
- FaceToned YouTube: https://www.youtube.com/channel/UCoMx6vZAfZ2n8opQDIp7tlg
- Carme’s Instagram: https://www.instagram.com/carmefarre_com/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this week’s episode, Tim speaks with Quinn Wilton, a social worker and DIY fundraiser, about her life, career trajectory, and growing community. While Quinn does give away some of the secrets to a stellar event, the importance of family, sibling, and community support is at the core of this issue. Tune in to hear Quinn’s incredible story from life in Canada’s urban and rural areas.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this episode, we have two return guests: George Pollock, Team FSHD Cycling, and Ally Roets, Parents’ Roundtable Leadership. George and Ally join Tim to discuss their participation in the upcoming Tour de Tuscon, a world-class cycling race, and their work to raise awareness about and funds for Early Onset FSHD research & treatment access. While Ally covers the importance of Early Onset specific research and funding, Geroge discusses the mindset and intentional training behind his training. Living with FSHD is like competing in an endurance event: it takes mindset, training, nutrition and hydration, consistency, support, and rest.
As George says: Movement is medicine, you have to do hard things.
Learn more about Early Onset FSHD: https://www.fshdsociety.org/early-onset-fshd/
Help George, Ally, and the rest of our riders reach their goal of raising $30,000 to support Early Onset FSHD research, support & treatments.
Ally’s Page: https://www.eltourtucson.org/earlyonsetfshd
George’s Page: https://www.eltourtucson.org/fshdcyclist
Tom’s Page: https://www.eltourtucson.org/Race/80091/Donate/fSbhnc05DGgxWHeq
This episode contains a video created by Sam Ray. You can view the original video on Youtube: https://youtu.be/PydgQ7C7F08?si=juUA7u1L9VBMmB74
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim and special guest Elissa for a deep conversation covering topics including:
- How FSHD can affect post-partum healing
- Finding a physical therapist who explains exercise in your “language,”
- Caring for your body and mind, and
- Learning to own your FSHD and it’s progression
Despite living with FSHD for over two decades, this was Elissa’s first conversation with another person living with FSHD. Her conversation with Tim is evocative, meditative, and a true testament to how living with FSHD is a complicated mixture of connection, movement, growth, and adaptation.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim, Ally, and Michelle for a crash course into expanded access. Expanded access allows folks living with rare diseases to request access to experimental drugs (those in clinical trials) even if they did not meet the clinical trial inclusion criteria. Ally and Michelle cover:
—what is Expanded Access; how it differs from Open Label Extension; and who can qualify for EA
—the application process and general timelines
—Familial, medical, and financial considerations including how to cover costs that insurance might deny or, at minimum, not cover
—the importance of increasing access to treatments and the benefits of expanded access.
This episode is packed with insight and worth repeat listens.
Ally Roets co-leads the month Parents’ Roundtable Gathering Place group and the Cure FSHD for All initiative. Ally is a passionate parent and advocate for access to treatments, and ultimately a cure, for everyone living with FSHD including those who fall outside trial inclusion criteria.
Dr. Michelle Mellion is the Chief Medical Officer for the FSHD Society and a clinician well-known for her work in the FSHD space. Dr. Mellion has worked both as a clinician and within the biotech/pharmaceutical spaces and is a passionate advocate for treatment access and the Early Onset community.
Please see the FDA website for more information on Expanded Access: https://www.fda.gov/news-events/public-health-focus/expanded-access
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim for an interview with Michael King, return guest and leader of the North Carolina Chapter and Walk & Roll. In this episode, King discusses the power of sharing your FSHD story to create community, as part of advocacy efforts, and to effect change.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join us for the 2025 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Amy Bekier, San Diego; Ian Barr, Long Island, NY; Mollie Garrett, Virginia; Meg Hart, Mid-Atlantic; and CeCe Bell, Intermountain (Idaho). This year’s Walk leaders represent folks living with FSHD, care partners, and loving family; “OG” leaders, veteran walk & rollers, and first-timers; and nearly every region in the continental US. Walk & Roll season is always filled with heart-warming stories, and this year’s Special is no different.
From maze races and specially-designed coloring books, to costume contests and dance teams, to iconic views, Walk & Rolls provide a space for inter-abled solidarity, community connections, and shared joy. To our Walk Leaders, Team Captains, and volunteers, thank you for your work to raise awareness about FSHD and funds to support our work to find treatments, and a cure, for FSHD.
This week, Tim spoke with Kendra, an Idaho resident with a family history of FSHD. Diagnosed at age 9, Kendra knew she had FSHD as early as 6 as her symptoms resembled those of her older brother. Kendra discusses how her faith helps her deal with the constant grieving process caused by FSHD: the grief at losing her brother so young and the grief that comes with each changed ability and lost muscle. Kendra’s story is one of perseverance, community support, love, and dark humor in the wake of FSHD relentless progression.
Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a long diagnostic journey filled with uninformed and misinformed care providers, leading the couple to do their own research with considerable trial and error. In this episode they discuss the importance of community support, how to adapt, supplements and vitamins, why you need to hydrate, and so much more. Married for 15 years and together for 20, Leah & Joe’s partnership proves their philosophy: when living in an inter-abled relationship, what you really need is more laughter and more love.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In honor of her retirement, join us for a final interview with June Kinoshita. Not only was June the first podcast guest, she served the FSHD Community with grace, vision, and unrelenting passion for over a decade. In this conversation with Tim, June reviews the highs, lows, and immeasurable growth she saw and cultivated. FSHD research, care, advocacy, and community building would not be what they are today without June. Thank you, June, for your time, your words, and your ever listening ear.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week, Dr. Ray Huml joined host Tim Hollenback for a conversation that dives deep into FSHD research, history, and treatment development. Dr. Huml, a dedicated caregiver, parent, and rare disease specialist, discussed his work on writing a book about rare disease care, disability rights advocacy, and small ways we can create massive change for loved ones living with FSHD.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this episode, Tim speaks with Aidan Mace about the power of vulnerability. Diagnosed within the last 4 months, Mace shares his diagnosis story – paging Dr. Google! – experiences with grief, and how FSHD changed his career path. Trained as an Emergency Responder, Fire Fighter, and EMT, Mace’s FSHD diagnosis spurred him to find a new way to continue serving his community. Mace now serves as the Account Manager for Fire Fighter Partnership at the Muscular Dystrophy Association. Tune in to hear Mace’s inspiring story.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
It’s World FSHD Day, a global day to raise awareness about FSH Muscular Dystrophy, it’s symptoms, and our fight for a cure. Join Tim for a special edition episode: our first ever SUPERCUT. In addition to Tim’s thoughts about World FSHD Day, the importance of the color orange, and our history, we’ve stitched together impactful moment from the last year of the podcast. Join us for stories and insight from Nia Stivers, Jennifer Egert, Chris Carno, Dan Wilson, and Debbie, Kristin, and Ally of our Early Onset Parents’ Roundtable.
For more information about World FSHD, please visit https://www.fshdsociety.org/get-involved/world-fshd-day/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim for a conversation with siblings Michele and Michael Ahlers about family, fundraising, and FSHD. Listen as Michael recounts Michele giving him the “FSHD frisk” and Michele shares her complicated emotions at Michael’s diagnosis shortly after the siblings re-entered each other’s lives. Committed to supporting each other and the FSHD community through training, healthy eating, and fundraising, tune in for the Ahlers’ Family story of perseverance.
Support Michael in the 2025 Triple Bypass: https://www.bikesignup.com/ahlers-fshd
About the Triple Bypass: https://www.triplebypass.org/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
More information about the 6/7/25 Ride: "Words aren’t enough to express my gratitude to Lindsey and Sarah (of Boulder Sports Physiotherapy) and the dozens of people (many affiliated with Evergreen Ride Club) who showed up and made this fundraiser a huge success. I’m blessed with an amazing extended family! All of you are the best people I know, and I’m thrilled so many new connections were made. Best of all, we raised over $1,600 for the FSHD Society! Every little bit counts towards their mission to fund the research and treatment that help improve life for those living with this terrible disease. On behalf of my sister Michele and I, and from the bottom of our hearts, THANK YOU! " -Michael Ahlers
You might have heard the exciting news: an undergraduate research team led by Heloise Hoffmann received $50,000 to fund their research into a novel treatment for FSHD. Join Tim for a conversation with Heloise, who lives with FSHD, and Alice as they discuss their unique approach, the varying pace of research, and their nearly two year process to design and fund their project. From patient-focused interviews and endless hours in the lab, the undergrad team at Myoterra Biosciences is dedicated to finding a cure for FSHD as science continues to advance at a breakneck pace.
For more information on Myoterra, read our recent blog post: https://www.fshdsociety.org/2025/04/21/hope-in-the-laboratory/
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim for a conversation with Tatiana Garcia, a college student in California. Tim & Tatiana talk misdiagnosis, the importance of family and community support, everyday adaptations, and how to become a fierce advocate for yourself and others.
Want to be on the podcast? Reach out like Tatiana did on social media or send Tim an email at FSHDRadio@FSHDSOciety.org.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join Tim for a conversation with Erin Saxon, Marketing Director, about a new look for the FSHD Society. From the empathy and intention behind brand colors to more cohesive messaging, Tim and Erin cover the full gamut of the process undertaken to rebrand the FSHD Society. Tune in for a look at how the Society will power the path forward.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this rare solo episode, hear host Tim Hollenback’s FSHD story and his personal philosophy on coaching. Adapted from his 2025 VLS story, don’t miss this opportunity to learn about Tim, the history of the podcast, and how an FSHD diagnosis can spur anyone into action.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week, Johnny Quintana joins host Tim Hollenback for a conversation about athleticism & perseverance. At the beginning of March 2025, Johnny placed 4th in the US ParaClimbing National Championship, a win allowing him to compete internationally as he works towards a spot on the 2028 USA Paralympic Team. When doctors told Johnny that FSHD would end his career as an athlete, he rose to the challenge to live life to his fullest potential.
Throughout the episode, Johnny and Tim discuss their athletic careers, how they’ve adapted to physical challenges, and the importance of a good training regimen, healthy diet, and a loving support system. Diagnosed at 19, but thriving in his mid-30s, Johnny has stepped into the spotlight as a powerful example of strength and grit.
Instagram: @johnnyquintana_jr
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Please note: This episode contains discussions of sensitive topics including death, diagnosis, and suicide. Listen with care.
This week, join host Tim Hollenback for an interview with Jim Chin, Board Chair. In addition to caring for a wife and son who lived with FSHD, Jim has served on the Board of Directors for 18 years. Knowledgeable about the history of the Society and every aspect of our work, Jim shares his years of experience with Tim before their conversation turns to a mutual love of coaching and baseball. As Tim said in the episode, he’s glad Jim could be on the podcast and wishes it could have been sooner. Don’t miss this episode with a powerhouse advocate of the FSHD community.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
This week, Gregg Lichtenstein, leader of the FSHD Wellness Hour online group, joins host Tim Hollenback for a conversation about creating and maintaining care networks. Don’t miss their candid conversation about the power of community—sometimes you need to talk to someone who understands how difficult it is to get up from a chair, or the toilet. As Gregg says in the episode, everyone has strengths and deficits. “Playing to strengths and finding folks to help with deficits, because everyone has them,” makes the difference.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join host Tim Hollenback for a humorous, insightful conversation with Nia Stivers. Passionate, vulnerable, and honest, Nia shares stories about growing up and going through college with FSHD, watching her mother’s progression, finding faith, and teaching her students to see and embrace difference. Small and large moments of compassion from her community have shaped Nia’s life and influenced her path to being a high school teacher. Don’t miss her story and the chance to learn about Scoot Scoot, her nicknamed power chair!
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Join host Tim Hollenback for a heartfelt and honest conversation with returning guest, Dr. Jennifer Egert. A licensed clinical psychologist living with FSHD, Egert guides Tim through her own reflections on decreased mobility, clinical trial participation, connection with others, and the importance of quieting the world around us so we can think and breathe. Winter encourages us to hibernate and rest. Take a deep breath and shift yourself towards a more mindful season. No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Grab your coffee, a pen, and a notebook and curl up for a masterclass in FSHD Research and developments with Dr. Lucienne Ronco. In the first FSHD Straight Talk episode of 2025, host Tim Hollenback talks everything FSHD research with the new Chief Science Officer of the FSHD Society. Dr. Ronco discusses: her work designing clinical trials at Fulcrum; initial insights from and plans for the Fulcrum Phase 1 and Phase 2 trial date; the promise of Avidity; and her hope-filled approach to working in the FSHD landscape. After their conversation, Tim offers advice, reflection on 2024, and his own hopes for FSHD treatments in the new year.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube, Facebook, and wherever you get your podcasts. Subscribe to make sure you never miss an episode!
You’ve seen the social media posts and heard the ads, now join us for a deep dive into BetterLife FSHD. This week, Tim is joined by Amy Bekier, BetterLife FSHD Focus Group Member, and Kayleigh Worek, BetterLife Program Manager. Together, they discuss:
––How BetterLife uses surveys to collect comprehensive data from platform users
––How survey data can match users with clinical trials/research opportunities AND provide researchers with information to conduct their research
––Current and upcoming features and benefits
––How Better Life provides resources and connections to help everyone live a Better Life while living with FSHD.
As Kayleigh said, “We’re really hoping [the platform] can be your one stop shop to live your best life with FSHD. We’re tackling a lot of needs and we want it to be able to help you back.”
About BetterLife FSHD
BetterLife FSHD is a health and research platform for people with FSHD. Our mission is to provide you with tools and resources to better understand and manage your FSHD, all while contributing to groundbreaking research.
BetterLife FSHD is owned and managed by the FSHD Society. Learn more and sign up today at www.BetterLifeFSHD.org.
About FSHD Straight Talk
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
Episodes highlighting members of the FSHD Community drop on the 2nd & 4th Tuesday of the month. Listen on Youtube, Facebook, Spotify, or wherever you get your podcasts.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
Today’s special episode spotlights two gifted musicians whose artistry inspires gratitude and reflection. Gracie Caggiano, a Kansas City-based singer-songwriter, shares her unique approach to crafting soulful, poetic music that blends intricate guitar work with heartfelt lyrics. Ben Livingston, a multi-talented Austin artist, talks about his eclectic sound, his love for collaboration, and how music has been a constant source of joy and connection.
We’re grateful for all our listeners and hope you enjoy hearing performances from Gracie and Ben!
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
“There was a time when those of us with FSHD might not have known anyone with FSHD outside of our families.” Nearly 30 years after his diagnosis, Don Burke drove around the US and Canada for 93 days, including a stop at the 2024 FSHD Connect Conference in Denver. Join us for a heartwarming episode featuring Don as he shares stories and insights from his most recent trip and years of previous adventures. A “Midwest nice” risk taker, Don wants everyone with FSHD to enjoy life to the fullest. “We have to take risks. We have to plan more than most. I have to adapt so that I never say, ‘I regret not trying that.’”
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces. When FSHD progresses relentlessly and quickly, minute matters. As Ally said at the end, these moms are tenacious, not going anywhere, and going to get treatments and a cure for their kids.
Join host Tim Hollenback for a phenomenal conversation with Michael King, the new Chapter Director for North Carolina. A go-getter by nature, Michael went from advocating for his health and a diagnosis to experiencing life after diagnosis to his fullest potential. In addition to attending Connect 2024, Michael spearheaded the North Carolina Walk & Roll and helped his F3 friends raise funds through their annual extinction run. Michael is a testament to the importance, power, and collective strength built through community. Tune in to hear his full story plus Tim’s thoughts on the recent Fulcrum trial news.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Happy International Walk & Roll Day! 🎉 In today’s special episode of FSHD Straight Talk, Tim interviews amazing Walk & Roll leaders to celebrate. Tune in as Mary Mauch and Suzy Kosten from Chicago, Ann Kolakowski from the Mid-Atlantic region, and Michael King from North Carolina share their stories and motivations for leading Walk & Rolls.
Watch the episode on Facebook or YouTube for photo recaps of this year’s events! Just head to the FSHD Society’s profile or channel. (Plus, be on the lookout for an extended interview with Michael in an upcoming episode!)
Join us in celebrating the power of the FSHD community today! For more information, visit fshdsociety.org/WalkRoll.
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support, Brittany shares humorous anecdotes from married life including the moment her husband thought she was going to tell him about her FSHD diagnosis. Tune in for her story of love, mindfulness, and community building.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach out!
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenback drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half. Don’t miss this fun and informative episode.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Rob Stemple, musician and writer, joins host Tim Hollenback for a candid conversation about FSHD and family. In this episode, Tim and Rob discuss the importance of family support, home and other accommodations, and how using writing, music, and other art forms can create a powerful form of emotional release. Tune in to hear all about Rob's long history as a musician, from his start in polka bands at age 13 through his recent turn as a musician at nursing homes and family events.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this episode of FSHD Straight Talk, host Tim Hollenbeck talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation in the Triple Bypass Race. As George said during his interview, “You could be gardening, it doesn't matter, as long as you're moving...to the best of your abilities.”
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this episode of FSHD Straight Talk, Tim interviews Chris Carrino, the play-by-play announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD! Chris talks about his career starting as a part-time producer to becoming a prominent voice in sports broadcasting. He also discusses life with FSHD and advocacy work, including a recent trip to Capitol Hill. This is a slam dunk interview you don’t want to miss!
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
It’s World FSHD Day! To celebrate today, Tim Hollenback, FSHD Straight Talk host, talks with: Ricardo Gerpe from FSHD Spain; Chelsea Moeller from the FSHD Society; Rick & Terry Colella from Friends of FSH Research; Jennifer Cherniwchan or the Alberta Chapter; Chris Carrino, announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD; and volunteer Priscilla Sharun.
For more information about World FSHD, please visit the FSHD Society website.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
Email: FSHDRadio@FSHDSociety.Org
In this episode of FSHD Straight Talk, Tim speaks with Wang Wen, a passionate advocate and prolific storyteller living in China. Following his long road to diagnosis, Wang has sprung into action leading support groups, creating educational documentaries, and using his social media platforms to raise awareness about FSHD. In 2025, Wang even hopes to write a book collecting stories from Chinese FSHers! Tune in to hear how Wang uses storytelling and activism to build awareness and push back against isolation. Thank you to Wang for reaching out to be on the podcast! If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media. On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla Sharun discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular exercise, healthy eating, mindfulness, and an array of supplements have increased her strength and flexibility, allowing her to be healthier, happier, and more present with her family. Catch the entire episode for tips, tricks, and a little homework from Tim!
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of FSHD progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of self. Conversational yet sincere, Hollenback and Arras' sharing of experiences and feelings is not an episode to miss.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
In today’s episode of FSHD Straight Talk, Madison Ferris dives into her latest project, the off-Broadway romantic comedy “All of Me,” which starts today! Madison shares her experiences of bringing diversity to the stage as the first wheelchair user to lead on Broadway. Catch her thoughts on how roles like hers can shift perceptions and open doors in the arts. You can see Madison live from April 23rd to June 16th in “All of Me.” Tickets available at https://thenewgroup.org/production/all-of-me/
In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with FSHD. As an added bonus, Trish delivers Tim's favorite podcast line EVER. You don't want to miss this honesty, funny, vulnerable conversation.
In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions, and a way to keep busy in retirement, through board service and Chapter Program leadership. If you've heard of Magic for a Cure or participated in a NYC Walk and Roll, you probably know David. If you haven't met him yet, spend the next 35 minutes hearing about how he stays passionate.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Tim is joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit (https://youtu.be/NfskqqQx7Rg), you already know Lonwabo has invaluable insights to share! In this episode, he talks about his journey with FSHD, from the struggle for diagnosis to actively managing his symptoms through fitness. Listen for Lonwabo’s practical and positive approach to tackling FSHD’s daily challenges.
We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with FSHD, and the story is inspired by his life and close friendship with Shane, its director. The FSHD Community has been eagerly awaiting more details about this exciting movie, and you don’t want to miss this episode!
You may notice that FSHD Radio has had a bit of a makeover and is now called FSHD Straight Talk. Not to worry! It’s still the same amazing host, Tim Hollenback, and he’s going to continue bringing you incredible stories from the FSHD Community.
In this episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD.
Through the lens of her own experiences and involvement with organizations like SAIL and TZ of Madison, WI, Jane discusses the importance of designing spaces that enhance well-being and independence, regardless of age or physical challenges. Listen to hear how thoughtful design can help people thrive at any stage of life!
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also listen to the episode on your favorite podcast app. Subscribe to make sure you never miss an episode!
Interested in being on the show in 2024, send Tim an email at FSHDRadio@FSHDSociety.Org.
Give Marisa a follow! Youtube/Instagram: @DisabledInNature
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio.
On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD.
A new video podcast is released the 2nd Tuesday of every month on YouTube and Facebook. Share your thoughts, or post questions in the comments section. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!
Interested in being on the show in 2024, send Tim an email at FSHDRadio@FSHDSociety.Org.
In this episode, join Tim as we wrap up the year with a profound discussion on the future of FSHD treatment and advocacy. Guest Ken Kahtava, Chief Business Officer of the FSHD Society, delves into Project Mercury, a groundbreaking initiative aiming to revolutionize access to therapies, improve clinical trials, and engage the FSHD community globally. From disease progression modeling to the collective power of global patient registries, this episode highlights the innovative strategies paving the way for a hopeful future in FSHD treatment.
In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad of three and business owner, also shares his diagnosis story and the impact FSHD has had within his family.
FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign, which encourages NFL players to support meaningful causes through customized cleats. His designer cleats will be auctioned by the NFL next week, with all proceeds benefiting FSHD Global.
Don’t miss the Seahawks vs. Dallas Cowboys game on Thursday, November 30th, at 8:15pm ET | 7:15pm CT | 6:15pm MT | 5:15pm PT to see Michael Dickson raise FSHD awareness! Follow @FSHDGlobal on social media to catch the auction link next week.
Happy Thanksgiving! We’re so grateful to have the privilege to serve the FSHD community. This special Thanksgiving broadcast is our way of saying thank you to everyone who helps make our community so strong and allows us to keep moving closer toward treatments and a cure.
This month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin and the Chipmunks and the Magic Camera, as Alvin. Her versatility extends to the world of television and film, where she has left her mark on numerous projects. Notably, Donna plays the lead in the international web series Donna On The Go, giving a lighthearted view of the challenges faced by individuals with disabilities. You can watch all the episodes at donna-on-the-go.com. Don’t miss Donna’s compelling story shared during this powerful interview!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
Earlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod, a potential groundbreaking therapy for FSHD. Mel Hayes, Chief Operating Officer of Fulcrum sat down with Tim to discuss what this exciting milestone means and fill us in on the latest from Project Mercury.
Catch a new Hot off the Press episode on the 4th Thursday of every month. Listen on your favorite podcast app or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
This month, Tim talks with guests Jenny and Tony Teel! Tony is affected by FSHD, and this dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Subscribe to their YouTube channel at https://www.youtube.com/@jennyandtony
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll! Listen to hear what the Walk & Roll means to Max and learn about the exciting things in store for the Los Angeles Walk. Max has a supporting role in Good Bad Things, and the film’s star Danny Kurtzman, who lives with FSHD, and director Shane Stanger will be at the LA Walk & Roll on September 17! Head here to get involved in the Walk & Roll to Cure FSHD: https://www.fshdsociety.org/walkroll
You can also read more about Good Bad Things here: https://bit.ly/3q6OrNM
Catch a new Hot off the Press episode on the 4th Thursday of every month. Listen on your favorite podcast app or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
This month, Tim got the chance to sit down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan talks with Tim about sailing around the world, staying disciplined, and how to approach self-defense when you live with FSHD. Don’t miss this motivating conversation!
Diagnosed with FSHD as a teenager, Ryan's unwavering determination has never allowed his diagnosis to stand in the way of his dreams. In early 2015, Ryan and his wife set sail from their home in San Diego, California, embarking on a voyage along the Mexican coast and across the Pacific Ocean to the Islands of Tahiti. Since then, they've embarked on an exploration of the remote islands and atolls of the tropical South Pacific, immersing themselves in a myriad of activities such as surfing, diving, kiteboarding, swimming, and even creating music within the cozy confines of their on-board studio. Ryan and his wife Nicole share their exciting adventures through their YouTube channel, aptly named Adventures of Two Afloat: https://www.youtube.com/c/TwoAfloatSailing
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube! Don’t forget to subscribe to make sure you never miss an episode!
The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year.
Led entirely by dozens of dedicated volunteers and supported by a small staff, the Walk & Roll to Cure FSHD is the only signature event in North America completely focused on funding progress for FSHD. To find a Walk & Roll location near you, head to https://bit.ly/3NQycgC.
Catch a new Hot off the Press episode on the 4th Thursday of every month. Listen on your favorite podcast app or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist’s support, she founded the Wheelchair Dancers Organization, enabling her to share her lifelong passion for dance with the disabled community. Beverly’s unwavering optimism and resilience shine through as she describes the impact of the Wheelchair Dancers Organization.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
You may have seen our updates from Milan last week, but what exactly is the International Research Congress? The FSHD Society’s annual FSHD IRC is the premier global conference focused exclusively on FSHD research. This conference brings together clinicians, researchers, pharmaceutical industry leaders, and scientists to discuss new developments and collaborate with one another. Check out this month’s Hot off the Press, recorded during the 30th annual IRC, to learn more and hear from Jamshid Arjomand, PhD. and Leigh Reynolds about the research that was shared last week.
Ally Roet’s video, which was shown during the first-ever Pediatric FSHD session, can be found here: https://youtu.be/BP2tU5xlx2w
Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
In today’s final episode, Mel Hayes, Chief Operating Officer of Fulcrum Therapeutics, discusses the REACH trial and other Fulcrum updates!
We are so grateful for all of today's exceptional guests and our gracious host, Tim Hollenback, for their dedication to the FSHD Community and for raising awareness on #WorldFSHDDay.
In our next #WorldFSHDDay episode, Dr. Nizar Saad of Nationwide Children’s Hospital discusses his research and FSHD Lab Day, which is coming up on July 8th. We have one more episode coming up!
Next up in our series of #WorldFSHDDay special episodes is Raj Badiani of FSHD UK! Raj discusses the patient experience and FSHD UK’s incredible work towards clinical trial readiness.
Emma Weatherley, Managing Director of FSHD Global chats with Tim from Down Under! Emma has been living with FSHD for years, and she spoke with Tim about Australia’s efforts with FSHD Global and Project Mercury. Stay tuned for more #WorldFSHDDay episodes!
Up next in our special #WorldFSHDDay interviews is Dr. Corrie Erasmus. Dr. Erasmus is a pediatric neurologist at Radboud University Medical Center in the Netherlands. Listen to hear about her research and the crucial importance of studying Pediatric FSHD.
Up next for #WorldFSHDDay, Jack Gerblick, FSHD Society board member chats with Tim. A dedicated volunteer who is impacted by FSHD, Jack is also the Community Development & Engagement Committee Chair and the leader of the Atlanta Chapter. Listen to hear about the Atlanta Chapter watch party tonight as the King and Queen buildings are lit orange for FSHD awareness!
It’s World FSHD Day! In our first special mini-episode of the day, Neil Camarta talks with Tim about the growth of the FSHD Canada Foundation and the future of Project Mercury. Stay tuned for more special episodes!
We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month! Lauren plays Jocelyn on the popular HBO series The Sex Lives of College Girls and is the founder and CEO of Live Solo, a lifestyle brand dedicated to young adults with disabilities who seek independence and self-empowerment. Lauren is a phenomenal actress, model, author, and disability advocate, and her new book "Access Your Drive and Enjoy the Ride: A Guide to Achieving Your Dreams from a Person with a Disability" is out now at all major bookstores!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
Did you know that June 20th is World FSHD Day? Check out this Hot off the Press episode to learn how to participate and what we have planned for this year! Tim will get you caught up on things like the Orange Slice Selfies campaign, special programming for the FSHD Radio Show, the International Research Congress in Milan, Project Mercury, and more. We have a lot in store for the month of June!
Find more details and the World FSHD Day toolkit here: https://www.fshdsociety.org/world-fshd-day/
Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
Family planning and adoption can be difficult subjects for anyone to navigate, especially in the face of FSHD. In this episode, Deb Calhoun and Jim & Mary Albert discuss the topic of adoption and FSHD, as well as the hurdles involved in parenting while differently abled. We hope you enjoy this insightful conversation about a subject that often doesn’t get the attention it deserves!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
April’s Hot off the Press guest is Amanda Hill, Director of Research and Patient Engagement at the FSHD Society. We are entering a new era of clinical trials in FSHD research. This is an exciting time, and Amanda sat down with Tim to explain everything you need to know when considering getting involved in clinical trials.
We’d like to hear from you about your clinical trial experiences! Here is a link to the survey that Amanda mentions: bit.ly/41YqHZl
Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
This month’s community profiles guest is Apex Frazier. Apex is a hip-hop artist living in Southern Ontario who has battled FSHD for the past five years. In this episode, Apex talks with Tim about dealing with the aggressive onset of FSHD while still in high school and how his experiences have shaped his identity as an individual and as a musician.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode! You can also subscribe to Apex’s YouTube channel and hear more of his music on Spotify. Find “Thick N Thin,” the single featured in this episode, here: https://www.youtube.com/watch?v=dB0EHaaVD4I
Have questions about Avidity’s upcoming FORTITUDE trial? This month, our Hot off the Press guest is Amy Halseth, PhD, of Avidity Biosciences. Amy is the Executive Director of Clinical Development and serves as the Program Lead for the company’s FSHD program. Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial. Amy sat down Leigh Reynolds of the FSHD Society to answer your questions from last month’s webinar. You can watch the webinar here if you missed it: bit.ly/3nc9LPV
Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube. Subscribe to make sure you never miss an episode!
This month, we’re honored to have entrepreneur and philanthropist Chip Wilson as our Community Profiles guest! Chip is the founder of Lululemon and has committed $100 million to targeted FSHD research through his mission-driven organization, SOLVE FSHD. In this episode, Chip talks with Tim about living with FSHD and the future of SOLVE FSHD.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
This month’s Hot off the Press guest is Jamshid Arjomand, PhD. Our Chief Science Officer is back on to talk about the Therapeutic Accelerator and the many ways the FSHD Society works to ensure the success of clinical drug trials. Jamshid explains how we help address gaps in clinical trial readiness and how you can get involved.
For a more in-depth look at the Therapeutic Accelerator, check out Jamshid’s presentation from our Volunteer Leadership Summit: https://bit.ly/3IrWrhg
Catch our Hot off the Press episodes on the 4th Thursday of each month.
This month’s guest is Paul Ronson of Suffolk, England, a radio host who lives with FSHD. He is a presenter for East Point Radio, a station broadcast throughout the UK, and during his extensive radio career, Paul has helped discover music artists like Howard Jones. In this episode, he shares stories about his fascinating career and how he has adapted to life with FSHD.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
Our Hot off the Press guest this month is filmmaker Jared Jacobsen. Jared has volunteered with the FSHD Society for many years, and his film studio, Stephen Jake Video Productions is named after his late father, Stephen Jacobsen, who had FSHD. He speaks with Tim about his award-winning short film, “The Reinventor,” which documents the many transformations made by Amy Bekier, painter and founder of the FSHD Society’s San Diego chapter, while living with FSHD. We are excited to share Jared’s story and more details on the making of this authentic and moving film!
To kick off the new season, we turn the tables on FSHD Radio Host, Tim Hollenback, putting him in the guest seat!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
Join us for the last FSHD Radio Show of 2022! For this special episode, Tim and FSHD Society’s CEO, Mark Stone, discuss all that has happened in the FSHD community this past year. Mark shares exciting updates in FSHD research and development in 2022, reviewing all that has happened in the FSHD community this year, as well as taking a look ahead to 2023.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
This month, our Hot off the Press guest is Leigh Reynolds. Leigh is FSHD Society’s Chief Program Strategist. She discusses updates about all things FSHD research and developments in the research field and gives a preview of our Giving Tuesday Radiothon! Don’t miss this great conversation with Leigh and our host, Tim Hollenback.
You can find the Needs Assessment Survey at: https://www.fshdsociety.org/needs-assessment/ and read Part One of our Year End blog post series here: https://www.fshdsociety.org/journey-to-a-cure/
This month, our guest is Kristin Duquette. She is a five-time American Paralympic Record Holder in swimming and the former US Team Captain for the 2010 Greek Open. She is living with FSHD and is a disability advocate. Listen in to her great conversation with Tim to hear about her amazing journey.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
This month we have two great guests, Ally Roets and Kristin Zwikau, who are leading the charge with our early-onset and pediatric FSHD families. In addition to coordinating our international early-onset chapter, Ally hosts our monthly Parents Roundtable and hotline. They're with us on this episode to talk about the M.O.V.E. Study and the great need for pediatric families to get involved.
This month, our guest is Ranae Beeker. Ranae is a retired RN, one of leaders of new Women on Wellness virtual group and a volunteer with FSHD Society, and a person with FSHD. This photo shows Ranae at the 2022 Pacific Northwest Walk & Roll to Cure FSHD! Listen in to her great conversation with our host Tim!
In this episode, Ranae talks about our Women on Wellness group. You can join the next meeting or find the online community that aligns with YOUR journey with FSHD at The Gathering Place: https://www.fshdsociety.org/gathering-place/
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
This month, our Hot off the Press guest is Amanda Hill. We are excited to introduce you to Amanda – she is FSHD Society’s newest staff member as the Director of Research and Patient Engagement. Amanda has been part of the FSHD Society community for many years as the Colorado Chapter Director and volunteer leader. She will be sharing about her role as well as information about True Cost of FSHD.
PACT (Patients Accelerating Clinical Trials) is your onramp to participating in all types of research. Whether it’s completing surveys, joining a clinical trial, or joining the upcoming PACT FSHD registry – an online platform where you will be able to contribute your information and access all types of research, including clinical trials.
The “True Cost of FSHD” survey is the first of its kind in the United States. Its purpose is to learn about the “hidden” costs to patients with FSHD and their family members.
This month, our guest is Broadway actress Madison Ferris! She played Laura Wingfield in The Glass Menagerie on Broadway, and she was the first wheelchair user to play a lead on Broadway! You may have also seen her on an episode of Law and Order: Special Victims Unit. She is living with FSHD and we can't wait to share this special episode with you!
You can see Madison in the play All of Me at Barrington Stage Company, starting September 21st in Pittsfield, MA.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
Join our host Tim with our special guest, actor & advocate Max Adler! Listen in to hear more about Max and why the Walk & Roll to Cure FSHD means so much to him.
Max launched Team Mighty Max because he watched his Mom, Lisa, and Grandma Ruth struggle with FSH Muscular Dystrophy. Determined to do all he could so that no one would have to go through this ever again, he joined forces with the FSHD Society and determined to be a part of the solution.
"I watched my Mom and Grandma struggle with this disease, and I don’t want that to happen to anyone, anywhere, ever again. The money we're raising by participating in this Walk & Roll is supporting programs and funding research that will directly impact patients and their families living with FSH Muscular Dystrophy (FSHD)." - Max Adler
Register for the Walk & Roll, join Max's team, donate to his fundraising efforts, or learn more here: www.fshdsociety.org/walk-roll
Our Hot off the Press guest this month is Beth Johnston, FSHD Society's Chief Community Engagement Officer. She will be speaking all about the 2022 Walk & Roll to Cure FSHD - what it is, how you can be involved, and most importantly, why it matters! Together, we move toward a CURE and Beth will be sharing how participating in the Walk & Roll helps move us toward this goal!
Every 4th Thursday of the month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
Register for the Walk & Roll to Cure FSHD here.
This month, our Community Profiles guest is Claire Szabo-Cassella of Phoenix, Arizona, writer of the Red Scooter Diaries blog. Claire and her husband Lou had a great conversation with our host, Tim. We can't wait to share it with you!
You can find the video interview of this episode on our YouTube page.
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
Leigh Reynolds, Chief Program Strategist for the FSHD Society, joins Tim to talk about all the activities patients and families can get involved in now! Learn more about PACT (Patients Accelerating Clinical Trials) initiatives such as Test FSHD and the True Cost of FSHD study, the Walk & Roll to Cure FSHD and more.
www.fshdsociety.org/testfshd
www.fshdsociety.org/true-cost
www.fshdsociety.org/fsh-events/walk-roll
This month's guest for our Community Profiles podcast episode is Dylan King, a Marine Corps veteran who lives with FSHD. Dylan shares his diagnosis story, how his FSHD affected his military career, and how he is using his love of fitness to thrive.
He is excited to share his story and his fitness expertise with the FSHD community, and we can't wait to share Tim and Dylan's great conversation with you!
If you'd like to watch the video interview, check in out on our YouTube page.
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
This month's guest for our "Hot Off the Press" episode is June Kinoshita, Senior Director of Research and Patient Education at the FSHD Society. She will be talking to us about our True Cost of FSHD survey. This survey will be the first of it's kind in the U.S. and is aimed at discovering the financial burdens families with FSHD face due to their illness. The finding will influence government and private insurance policies that will affect whether you, as an individual living with FSHD, will have access to affordable treatments.
This may be one of the most urgent and impactful surveys we have ever done. We will be recruiting for this survey June 18-July 16, 2022. Tune in to learn more!
If you want to learn more about the FSHD CTRN and the MOVE and MOVE+ studies, this Radio Show episode is for you! This month's guest for our Community Profiles podcast episode is Michaela Walker, Research Project Manager for the FSHD CTRN and the MOVE and MOVE+ studies. Michaela will tell us all about the CTRN, who can be involved the MOVE study, and why it's so important for the FSHD community! We can’t wait to share Tim and Michaela's great conversation.
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
Our guest is Dr. David Younger, speaking to us about why he has chosen to become one of our most active community members. David volunteers his time, talents, and treasure to support the work of the FSHD Society in a myriad of ways and we are all the better for it!
Our short-form Hot off the Press episodes bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
This month's guest for FSHD Radio: Community Profiles is Christel Rohrs. Christel shares her story with FSHD and how she continues to thrive while living with her diagnosis.
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
In this episode of the FSHD Radio Show, our host Tim will be talking with Anna Gilmore, FSHD Society's Regional Director for Community Engagement. Learn all about the upcoming FSHD Connect Conference, the 29th Annual FSHD Society International Research Congress, and the FSHD World Alliance meeting - all happening in June 2022 in Orlando, FL! Learn how YOU can participate and take a peek behind the scenes of all the planning.
2022 FSHD Connect conference information: https://www.fshdsociety.org/fsh-events/fshd-connect-conference/
International Research Congress information: https://www.fshdsociety.org/connect/worldfshdalliance/
World FSHD Alliance information: https://www.fshdsociety.org/connect/worldfshdalliance/
Our short-form Hot off the Press episodes bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
This month's guest for FSHD Radio: Community Profiles is Lexi Pappas. Lexi has been an advocate for the FSHD community for many years and is a Walk & Roll leader as well as a GenZ of FSHD admin. We can’t wait to share Tim and Lexi's great conversation!
Follow GenZ of FSHD on Instagram: https://www.instagram.com/genz_of_fshd/
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
In this episode of the FSHD Radio Show, our host Tim will be talking with Beth Johnston, FSHD Society’s Chief Community Engagement Officer. Learn all about the Chapter Program at FSHD Society and hear all the latest FSHD Society news with Tim and Beth!
Get involved: https://www.fshdsociety.org/fshd-events-calendar/
Find your local chapter: https://www.fshdsociety.org/connect/local-chapters/
Our short-form Hot off the Press episodes bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
More about the FSHD Radio Show: https://www.fshdsociety.org/fshd-radio/
Join us for this episode as our host Tim interviews Rick Whitehead, an artist who has FSHD. Rick has been aware of his FSHD since his teens. He has been in five clinical trials and is “trying to be on the front line and as proactive as I can be.”
Listen in to Tim and Rick's conversation as they discuss Rick's story with FSHD, his work as an artist, and his experience with the importance of being actively involved in the FSHD community.
For more details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
Join the conversation with our Chief Science Officer, Jamshid Arjomand, PhD! This is the first of our Hot off the Press Radio Show episodes.
These short-form episodes will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD. These episodes will release on the 4th Thursday of every month.
Learn more about the FSHD Radio Show here: https://www.fshdsociety.org/fshd-radio/
Learn more about Jamshid here: https://www.fshdsociety.org/about-us/our-team/jamshid-arjomand-phd/
Learn about our research program here: https://www.fshdsociety.org/therapeutic-accelerator/
We are excited about our special guest this month, Steve Way. Steve is an actor and comedian – you can currently find him on the show Ramy on Hulu. He was born with Muscular Dystrophy and is an advocate for disability awareness. We can’t wait to share Tim and Steve’s great conversation! You can learn more about Steve at his website here.
Sam Ray, a 15-year-old, in Tucson, AZ, who is living with Early-onset FSHD. Sam will talk with Tim about how his FSHD motivated him to explore exoskeleton technology, and fostered his love of flying drones. Sam will share the story of his struggles to obtain an adaptive driver’s license and talk about what it is like to be a high school student with FSHD.
In the fourth and final hour we are jamin with CSO Jamshid Arjomand; PhD about the positive outlook of 2022. Then Ranae Beeker makes a grand entrance as she shares her story and how the new Women Of Wellness group started. Finally, Molly White helps us end the event with great news from our sponsor Dyne Therapeutics.
We welcome in amazing guests for hour 3 of the Radiothon. Kiley Higgs discusses the importance of the CTRN. Heloise Hoffman inspires us with her story and how GenZ is making a positive impact on our community. Steven Blier, pianist and Julliard teacher, finishes the hour with his story of adapting in trying times with FSHD.
This is hour 2 of the Giving Tuesday Radiothon. We welcome Scott Harper, Jacob Wise and Anna Gilmore. These guests bring the energy and positivity as we talk about research, growth in the chapters and so much more!
This is hour 1 of the Giving Tuesday Radiothon. We kick things off with Mark Stone, FSHD Society CEO; Haviva Ner David; Olga Mitelman, MD; and Sharif Tabebordbar.
This episode's guest is our chief science officer, Jamshid Arjomand, PhD! He’ll be sharing the latest and greatest in FSHD research, including news from the Clinical Trial Research Network investigators meeting that just happened last week in Virginia, what’s going on in drug development (that he’s allowed to divulge publicly), and more!
This month’s guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research and treatments.
This episode, the featured guest is our National Walk & Roll Ambassador, actor Max Adler, who will be talking about his FSHD advocacy and this year’s Walk & Roll. We hope he’ll also share some juicy details about upcoming acting and directing projects. Max will be joined by the FSHD Society’s Leigh Reynolds.
This Radio Show episode features Heloise Hoffmann, one of the youth advocates who are leading our new group of GenZers (and GenZs at heart). She will be discussing the mission of this group and where you can find and engage with them.
Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He’ll update you about the latest research and drug development advances (that he’s allowed to talk about). If you have questions about FSHD research, now’s your chance to get them answered!
“Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy. “I know it can seem impossible to feel peaceful and calm when having worrisome thoughts or waiting for the next shoe to drop. Being stressed all the time is exhausting,” she says. “The truth is that I, like most people, believed that if they could just find a cure, or if I repeated enough affirmations, I would be happy, but I discovered that there was more to it than that.” Brant says negative belief patterns, if left unchecked, can undermine efforts to align with our natural state of peace and calm. She has created a simple strategy to help clients quickly reveal those hidden patterns and show them how to neutralize their influence.
After 20 years of working on my own limiting beliefs and assisting hundreds of clients with theirs, Brant developed The Alignment Strategy, a simple and effective tool to zero in on where the negative patterns originated. “I created the Alignment Strategy template to help people bring awareness to their own patterns so they’ll be less stressed and more peaceful and calm with the people they love.”
Lori Brant has a Bachelor of Psychology, Bachelor of Education, is a Life Coach, Spiritual Life Coach, and Life Coach Trainer. She was diagnosed with FSHD at age 20. You can learn more about her at www.LoriBrant.com. Her books, The Alignment Strategy and The Happiness Toolbox: Finding happiness regardless of circumstances are available on Amazon, Kobo, Smashwords, Barnes and Nobel and Authors Republic. Follow her on Facebook www.facebook.com/unleashmygreatness and Instagram @lori.brant
Haviva Ner-David is an ordained rabbi and interfaith-interspiritual minister, with a doctorate in philosophy and an M.F.A in Creative Writing. She runs Shmaya: A Mikveh for Mind, Body and Soul, where she officiates ritual immersion ceremonies and offers group workshops. A certified spiritual director with a specialty in dreamwork, she works with individuals and couples. Rabbi Ner-David is the author of two published spiritual journey memoirs and has a third, Dreaming Against the Current: A Rabbi’s Soul Journey, on the way. She is also the author of a guidebook for engaged couples. Hope Valley is her debut novel. Rabbi Ner-David is involved in peace work, promoting shared living among Jews, Christians and Muslims in Galilee, where she lives with Jacob, her life partner of thirty years, their seven children and their dog and cat. She also lives with a genetic degenerative muscular disease called FSHD, which has been one of her greatest teachers.
Hope Valley is available on Kindle and in paperback on Amazon.
Our guest for this episode is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a “podcast about comedy and courage.” We can’t wait to catch up with him!
This episode features Sue Drescher, co-director of the Society's Bay Area chapter and co-moderator of the monthly Sharegiver Hour, a virtual support group for family members who are providing care for a person with FSHD. Sue will share her story and why she decided to start the Sharegiver Hour.…
We are kicking off the new year with special guest MaRynn Taylor, a rising star in country music. The Michigan native signed with Nashville-based Black River Entertainment in 2019 and released her first single, “Dads and Daughters,” a beautiful, heart-tugging song dedicated to her father, who has FSH muscular dystrophy. Watch below. Bring kleenex. Plus we chat about New Year's resolutions and what is new in the world of FSHD Society.
In our final episode for 2020, we are joined by our fabulous fitness gurus Mitch Wade and Bill Herzberg for their exercise insights. Stock up on ideas to up your fitness game in the new year! Mitch is looking for your input on stating a FSHD exercise group. Please email Mitch at mwadefit@gmail.com. Let him know if you are interested and what time a group training session would work best for you. Thank you so much for supporting the show in 2020! See you next year!
Our guest this week is Missy Dixon, mental health counselor at the University of Utah who has worked with FSHD families. She’ll talk about coping mechanisms for adults and children living with FSHD, as well as for their family members. We’ll also discuss the importance of social networks and support. Missy gives us great tools to use when handling our Mental Fitness.
On this episode of the FSHD Society radio show we welcome Eddie Barocas. Ed is an extraordinary champion for underdogs, who until recently served as Legal Director of the American Civil Liberties Union of New Jersey. You can read more about him on our blog. He will talk about his amazing life and how FSHD may have helped make him who he is.
On this episode of the FSHD Society radio show we share our thanks. Tim hosts with input from the listeners great Thanksgiving stories. Stories about Thanksgiving cooking disasters and what to be thankful for in this covid-19 time. Plus we touch base on what is coming up in the FSHD Society community.
This episode we welcome in again Bill and Mitch. We talk again about the physical side of FSHD. We key in on keeping a routine and dealing with the change in season. It is tough to keep yourself moving and healthy as it gets cold out. Mitch and Bill give some great advice to help. They also talk about specific workouts to help with what Mitch calls the "second core". Your ankles and feet are key to balance and movement. Mitch gives us great tools to help.
This week we welcome back Dr. Jen Egert, psychologist and mindfulness coach. This episode Dr. Jen Egert goes through a mindful practice. She teaches us how to get started in mindfulness and the amazing benefits it offers. Just listening to her will calm you down. She offers wonderful insights into our lives and minds.
Our guests on this episode are Mitch Wade and Bill Hertzberg, our fitness gurus. They’ll be demonstrating some of the workouts that have helped Bill with his FSHD symptoms and answer your questions. Bill and Mitch focus in on balance and stability. I ask the question can a person with FSHD work to regain their agility? Mitch's answer may surprise you. All this and more!
Our guest on this episode is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. In our webinar last week, White discussed her perspective on the impact of the FSHD community’s role in therapy development. This is your chance to ask any questions you may have. White previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people living with myotonic dystrophy. In that role, she led strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the foundation and its staff. Molly has over 25 years of leadership-level experience building, implementing and running award-winning domestic and international community programs for organizations in both the private and nonprofit sectors.
Our guest on this episode is Kent Drescher, PhD, co-director of the FSHD Society’s Bay Area chapter and a retired clinical psychologist. He will talk about acceptance and commitment therapy (ACT), which has been shown in a clinical trial to be beneficial to people with FSHD. He will discuss his own experience of living with FSHD, and share his past work working with veterans. Kent dives deep into ACT therapy. He describes in detail how it can change your life in many ways, physically and emotionally.
special guest is Josh Bergmann, multi-talented singer-songwriter-mandolinist. His band Rose Valley Thorns’ website states that “Joshua Bergmann’s immense passion for music brought The Rose Valley Thorns together. While pouring himself into playing mandolin and leading the vocals for this band, Joshua is also a respectable multi-instrumentalist, performer, and songwriter in various other genres. Pulling from an array of experience, from classical training to old-time performance, jazz big bands to big rock bands, Joshua is prepared to make music in just about any setting and does so with a commendable love for the art that goes so far in creating a compelling performance.” Did we mention Josh has FSHD? To help Josh in support please visit: https://www.patreon.com/joshuabergmann
Our guests are Jenny and Tony, a married couple who share information and offer encouragement on their YouTube channel in the context of their interabled relationship. Tony’s life with FSHD has set them on a journey to discover better ways to problem solve together and live life to the fullest. Learn more about them here.
Our guests tonight are, Kathryn Wagner, MD PhD, and her colleague Doris Leung, MD PhD. Dr. Wagner has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and Neuroscience at the Johns Hopkins School of Medicine, she has established one of the world’s leading centers for FSHD research. Drawing on her deep experience treating children and adults with genetic muscle disease, she recently published a book for patients and families titled 100 Questions & Answers About Muscular Dystrophy (on Kindle also available direct from the publisher). Dr. Leung is a member of the clinical and research staff at the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and an assistant professor in the Department of Neurology at the Johns Hopkins School of Medicine. Drs. Wagner and Leung will discuss clinical care and research at KKI and answer your questions!
Our guest tonight is Dr. Jen Egert, a psychologist living with FSHD, who will discuss strategies for maintaining peace of mind in these stressful times. We discuss the details of living with emotions. I share my personal struggle with anxiety and negativity. Dr. Egert and also discuss the topic of FSHD defining us. This is a very valuable show for all those that listen. This is not just an episode for people with FSHD. It is for the caregivers and family and anyone that deals with emotional issues. That is all of us.
This episode of the FSHD Society Radio Show we chat with Beth Johnston and Leigh Reynolds. We talk about the FSHD Society’s biggest fundraising event of the year, the Walk & Roll to Cure FSHD on September 12. Tune in to learn how you can participate. To join the Walk N Roll event https://www.fshdsociety.org/fsh-events/walk-roll-to-cure-fshd/
On this episode of the FSHD Society Radio Show the guest is Dr. Anthony Romeo. Dr. Romeo is a distinguished orthopedic surgeon who is one of the leading experts on surgery to stabilize the shoulder blade (scapula) in individuals with FSH muscular dystrophy. Read more about his impressive career on his website. He was last week’s FSHD University webinar speaker and is available tonight to answer your questions!
Lifelong interests in science and sports have led Dr. Romeo to the use of the most advanced methods of restoring function of injured and arthritic shoulders and elbows in addition to treating sports related injuries and conditions. Dr. Romeo has designed and developed innovative advanced shoulder replacement systems for the treatment of arthritis. He is a renowned scholar who has authored over 300 peer-reviewed journal articles and thirty chapters in orthopedic textbooks. Moreover, he has served as senior editor on several orthopedics and sports medicine books and is the Chief Medical Editor of Orthopedics Today. He has lectured extensively on advanced surgical techniques to surgeons at both national and international forums.
He received his Medical Degree from the St. Louis University School of Medicine. He completed his residency in orthopedic surgery at the Cleveland Clinic Foundation in Ohio, and his shoulder and elbow surgery fellowship at the University of Washington Medical Center in Seattle.
Our guests on this episode are our favorite exercise mavens, Bill Herzberg and Mitch Wade. They’ll be sharing their experiences with workouts that have improved Bill’s strength, range of motion, and endurance. Each month Bill and Mitch talk to us about a exercise that will help us stay moving. This episode is about the shoulders. Visit Mitch at @mitchwadePDX on Instagram.
This week’s guest is Frank Hanley, the FSHD Society’s South Carolina Chapter Director. Frank is a certified Qigong instructor (pronounced chee gong) and Kung Fu teacher. Frank will discuss how he uses his daily martial arts practice (qigong and kung fu) to fight back against FSH.
This week’s guests are Howard Chabner, FSHD Society board vice-chair and retired disability rights lawyer, Melissa Riess, a staff attorney at Disability Rights Advocates in Berkeley, and Dani Liptak and Carden Wyckoff, who have been outspoken advocates for disability rights in the community. We’ll reflect on the impact of the ADA and the many challenges that remain in the fight for full inclusion and equity.
This episode guests are Romesh Subramanian and Molly White of Dyne Therapeutics. Dyne recently announced that it is ramping up its FSHD therapeutic development program. Romesh brings extensive drug discovery, translational medicine and leadership experience to Dyne. He formerly led new modality discovery research at Alexion Pharmaceuticals, focusing on nucleic acid, antibody and enzyme replacement therapies. Previously, he co-founded RaNA Therapeutics, now Translate Bio, a company leveraging long non-coding RNA to increase gene activation for rare disease therapies. Prior to co-founding RaNA, Romesh held positions of increasing responsibility at Pfizer and Thrasos Therapeutics, a biotechnology startup. Currently, he is an entrepreneur-in-residence at Atlas Venture, founder and board observer for Dyne Therapeutics, and also serves on the advisory board of the Harvard Medical School Initiative for RNA Medicine. Romesh earned his B.S. from Loyola University, his M.S. from Duke University, and his Ph.D. from Emory University.
Molly brings extensive experience in patient advocacy and community engagement to her role at Dyne. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people living with myotonic dystrophy. In that role, she led strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the foundation and its staff. Molly has over 25 years of leadership-level experience building, implementing and running award-winning domestic and international community programs for organizations in both the private and nonprofit sectors. She has created partnerships with a range of governmental, nonprofit and private sector stakeholders to launch initiatives targeting key national issues such as childhood obesity prevention and components of healthcare reform. Molly earned her MA from the University of Iowa.
This month’s guests are Bill Herzberg and Mitch Wade, FSHD patient and fitness trainer, respectively, who are making waves in our community with their weekly fitness webinars. They’ll be discussing the strategies they have worked out over the years to successfully address a variety of issues that have resulted from Bill’s FSH muscular dystrophy.
Our guest this week is Lynn Stevens, Director of Workplace Development for Goodwill of North Louisiana. Lynn has been serving the nonprofit sector for over 20 years. She has extensive knowledge, expertise in leading and guiding many types of local, regional and national organizations. “My passion is serving others and creating positive change,” she says. Having been diagnosed with FSHD and needing to make changes in her career as her symptoms progressed, she understands well the challenges of finding workplaces that will accommodate individuals with disabilities. We look forward to hearing what she has to say!
This month’s guest is Carden Wyckoff, FSHD Society board member and supreme champion of accessibility and leader who laughs in the face of limits. With her own podcast, “Freewheelin’ with CardenOfMilk“, Carden (@cardenofmilk) shines a new light on accessibility and thriving through any challenge.
Carden Wyckoff, podcaster
“Living with a progressive disease can have so many ups and downs, and my goal is to give voice and power to it all, knock down barriers so we can roll through life a little easier and build a community to do this together,” she says. “We’re going to deep dive into the fascinating, exciting, disappointing, harrowing and relatable, personal journeys of life through the lens of a disability, because disabilities don’t just affect the individual, it touches the entire network. I’ll be sharing my story, hopes, and dreams and offering a perspective from friends, family, and others with various disabilities.”
This special episode highlights an interview with a great friend of the show Goran Kralj. Goran is the lead singer of the band Gufs and has solo work as well. Goran's resent song, "When This Is Over" keys in on the current time we are all coping with. It is a positive song when we needed it most. I had the pleaseure to talk with Goran about the song creation and other music he is working on.
Join host Tim Hollenback and our guest this month is Julie Cohen, MSc, a senior genetic counselor at the Kennedy Krieger Institute and an Assistant Professor of Neurology at Johns Hopkins University School of Medicine. Julie received her Master’s degree from the Johns Hopkins/National Institutes of Health Genetic Counseling Training Program. With more than a decade of experience, Julie specializes in neurogenetics, neuromuscular disorders, and clinical genomics. Julie has been a member of the multidisciplinary clinical team in the Center for Genetic Muscle Disorders at Kennedy Krieger Institute. She is passionate about caring for patients and families affected by FSHD and other hereditary muscle disorders.
Join host Tim Hollenback for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. “It was a blow to be told I have a degenerative neuromuscular disease that has no cure,” Justin recalls. “I’ve always been very active with sports, but worse than the realization that some of the things I enjoy could be taken away was thinking about how my diagnosis could greatly affect my family.” A few years after his diagnosis, Justin’s family participated in its first MDA Muscle Walk. He called the experience an “eye opener” and since then has participated in the MDA walk each year, along with the inaugural FSHD Walk & Roll in Chicago.
In 2018, Justin had back surgery to repair some herniated discs which he felt was a result of FSHD. “While laid up, I started researching how to start a nonprofit. I eventually created The TurfTank Foundation and received 501(c)(3) status. This was prior to the chapter development from the FSHD Society and my goal was to look at doing something that could be directly for FSHD.” Justin hopes to organize a golf tournament for this summer to help raise funds that can then be distributed to the FSHD Society and the MDA.
+ GOOGLE CALENDAR+ ICAL EXPORT
Join radio host Tim Hollenback on the show this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harperis principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children’s Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist who has spent his career working to develop gene therapy approaches for muscular dystrophies. As a PhD student at the University of Michigan (1997-2002), he and colleagues created “micro-dystrophin” gene therapy to treat Duchenne Muscular Dystrophy (DMD) in mice. Micro-dystrophin gene therapy is now being independently tested in boys with DMD. The lessons learned in DMD can now be applied to develop gene therapies for FSHD, and this has been a main focus of the Harper lab during the past decade. Dr. Harper was selected as the Outstanding New Investigator by the American Society of Gene and Cell Therapy in 2014.
This episode features three interviews from the 2019 Giving Tuesday telethon event. First interview is with Kiley Higgs. Kiley is the Kansas City FSHD Society Chapter director and she is the manager for the clinical trial research network with UK Medical Center. The second interview is with Dave Lukas, The Chicagoland chapter director. Finally Beth Johnston, FSHD Society's Chief Community Development office talks about the chapters and Walk 'N Roll events.
This episode highlights the interviews from the 2019 Giving Tuesday telethon event. Episode 2 features interviews with NFL Film's Director of Business, Alan Brown. Then a great conversation with Psychologist and mindfulness coach Jen Egert. Final interview is with the voice of the Brooklyn Nets Chris Carrino.
This episode highlights the first 3 interviews from the 2019 Giving Tuesday telethon event. This episode features interviews with FSHD Society's President and CEO, Mark Stone. FSHD Society's Chief Strategic Officer, June Kinoshita. The final interview is with Dr. Lou Kunkel. Dr. Kunkel is a renowned Harvard Scientist that discovered the Duchenne Muscular Dystrophy gene.
guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a “disease she had never heard of,” Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not only come to turns with life with FSHD, she has turned her experience into a source of strength, to help others with disabilities. She shared her journey in her blog post: Finding strength in our pain. And now you’ll get to “meet” her on FSHD Society Radio.
FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music.
Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician’s performances have been loving every note.
When she was younger, all Jenny Hasenjaeger needed was a round hairbrush for a mic; a Reba, Patsy or Ella cassette; and a big imagination, and the concert was on. Today, the Nebraska native has a hook book, a digital recorder and that same big imagination, and puts lyrics to melodies.
Contact Jenny at gottawritemusic@yahoo.com
and follow Levi on youtube:
https://www.youtube.com/channel/UCFMU231xxDEW4Y1bmMnFhOg
Join host Tim Hollenback this Wednesday, October 30, at 9:00 pm ET on Facebook Live for a conversation with the fantastic Alan Brown. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL).
Alan has FSHD in his family. “My great-grandmother, grandmother, mother and brother all had/have it,” he says. “I was the first one diagnosed in the family when I was 25 years old.” Alan has spent the past 31 years in TV production. While juggling a demanding career, he found time to organize three fundraisers for FSHD research, complete with local bands, auctions, and great food, and has provided Super Bowl tickets that have been used to raise tens of thousands of dollars for the FSHD Society. Listen and be inspired!
Join radio host Tim Hollenback for a conversation with Dr. David Younger, a clinical psychologist based in Austin, Texas. He was diagnosed with FSHD at age four, the same time as his mother and grandmother were also found to have the condition. In a compelling blog post, he shared his personal journey of learning to accept his life with FSHD and moving beyond it to finding well-being and becoming a clinical psychologist.
Today, “I have a 100% online video-based practice with individuals and couples,” he says. “My two main focuses are relationships and people with chronic health conditions. That said, I also see people dealing with depression, anxiety, stress and life-changes.” We hope you’ll tune in on Facebook Live and join the conversation with Dr. Younger. He’ll be happy to answer your questions about relationships, coping with FSHD, and more. Post questions in the Comments section and we’ll ask them on the air as well. Visit Dr. Younger’s website for more information.
Join radio host Tim Hollenback for our conversation with the fascinating Heather Green. You can read her story here. A former singer, model, and interior designer, Heather embarked on a new career when her diagnosis with FSHD forced her to reassess her future. Childhood memories of a small-town murder mystery reawakened her fascination with crime and Heather decided to pursue degrees in forensic sciences and psychology. She has worked with the FBI, researchers stalkers, worked on high-profile cases, and is counseling violent offenders in a California state prison. She has incredible stories to share. You won’t want to miss this.
We have a conversation with Sue Aumiller, an Ohio woman who felt compelled to act when her son, and then her husband, were diagnosed with FSH muscular dystrophy. Barely a year later, she is director of the FSHD Society’s Columbus chapter, has a wildly successful Walk & Roll to Cure FSHD under her belt, and is contributing articles to the FSHD Advocate. Talk about turning lemons into lemonade! What was her personal journey like? What advice does she have to offer others who are thinking about taking the plunge into advocacy and volunteer leadership? Join us to find out!
Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from OISE at the University of Toronto. She is the former director of the major in Human and Social Development at the University of Miami and has also worked in a variety of clinical settings, including a child guidance clinic, a university counseling center and a rehabilitation hospital. She is the author or co-author of four books dealing with well-being, change, and disability. Isaac Prilleltensky, PhD, is the vice provost for institutional culture at the university, where he is also a former dean and professor of educational and psychological studies. He is a community psychologist with interests in the connection between wellness and fairness. He has published ten books and over 130 scientific papers and chapters. He is the recipient of awards by the American Psychological Association for his scholarly work and by the National Newspaper Association for his humor writing.
Based on their research, recent books on well-being and change, and on their family and professional experience, the Prilleltenskys will discuss the emotional and relational side of FSHD. Ora, who uses an electric wheelchair, was diagnosed with FSHD at age 18. She and Isaac have been married for 36 years. For them, FSHD is a family affair that is best managed within the context of a loving and supportive relationship. The goal of the session is to provide a safe space for participants to share experiences, connect with others, and explore solutions that fit their needs and circumstances.
This episode features a in studio guest, Ryan Bindl and an interview with Austin-based artist Ben Livingston and Steve Kowalik.
Ryan Bindl is a 5th grader that created a project for school that generated a positive impact to help the FSH Society.
Ben drew our attention earlier this year when he shared his video, “My miracle at Barton Springs,” on Facebook.
According to Ben's website:
Livingston is internationally known as a neon/light sculptor. He is the inventor of an opalescent color palette for neon, using a variety of UV sensitive phosphorescent compounds and minerals. Ben originally observed these glowing compounds in New Zealand in 1985 which ultimately led to his signature work- luminous tubes he calls ‘Nightsticks’ or ‘Spirit Antennae’.
“Livingston works in a wide range of mediums such as found objects, historical archives and artifacts, photography, wood, copper, steel, glass, drawing, painting, and video. He is also a story-teller, lecturer, blogger, singer/songwriter and performer as well as an actor in film and television. Many articles have been published regarding his artwork, neon landmarks, life, thoughts and world travel.
His current work called “Spirit Houses, Ghosts and Memory” is a site specific traveling exhibit designed to convert the static nature of any museum or art center into a spirit house made of reinterpreted materials from that community’s dynamic past combined with Spirit Antennae which responds directly to those materials.
Steve Kowalik is Ben's muscle therapist. Steve is based in Austin, TX he talks in detail about how his therapy can help those with FSHD. Steve gives great advice how we can help ourselves with proper treatment to keep ourselves more active.
Join us for what is sure to be a fascinating conversations!
This episode we have an interview with Katelyn Michals, a national board-certified licensed acupuncturist who has been working with patients in the Greater Milwaukee Area since 2008. She graduated from the Midwest College of Oriental Medicine with a Master’s in Acupuncture and Herbal Medicine, and a bachelor’s in nutrition. Katelyn infuses her treatments with mind-body education, and is on a personal mission to gently remind each person she meets of the innate wellness that already resides within them.
She is a certified practitioner with SIRPA (which stands for Stress Illness Recovery Practitioner’s Association), an organization that aims to educate physicians and patients alike of the connections between emotional and physical trauma, psychological stress, and chronic symptoms. We will also chat with Marla Waseka, an FSHer from Minnesota who uses some of these tools for dealing with her FSHD.
An interview with two people from the Chicagoland area who live with FSHD. Ramsey Shahed is a 21 year old student at DePaul University studying for his master’s in cybersecurity. He was diagnosed around ate 14 and has been thriving ever since.
Brandi Witt is married to Dave Lukas, director of the Chicagoland chapter. She understands the challenges of living with a rare disease more than most people, having seen her first husband decline and pass away from one such rare condition. When Dave was diagnosed with FSHD, it was as though lightning had struck twice. Brandi brings to our community the hard-won lessons she learned as a partner, caregiver, and fierce advocate to drive change and advance treatments for rare diseases.
interview with June Kinoshita, Chief Strategic Programs Officer of the FSH Society. This has been a breakthrough year for the FSH Society, with the launch of the FSHD Therapeutics Accelerator project, national chapter system, and signature Walk & Roll fundraiser. June will share the latest news on drug development and clinical trials, research advances and what they mean for you, and more. She’ll be happy to answer your questions, which you ask live on-air or post in comments below and on the FSH Society Facebook page
Amanda Rickard--someone well known to the FSHD community as one of those exceptional scientists who love to help patients and families understand what's going on at the frontiers of FSHD research.
Amanda Rickard is a scientist focused on FSHD therapeutics development at Genea Biocells. She began her work on FSHD in Dr. Dan Miller’s lab at the University of Washington’s Institute for Stem Cell and Regenerative Medicine in Seattle. Three years ago she moved to San Diego to lead Biocells’ efforts toward identifying a disease-modifying treatment for FSHD patients. She also serves as an FSH Society volunteer, participates in patient community groups, and sits on the Board of Directors and Scientific Advisory Board for Friends of FSH Research.
Genea Biocells is an early stage drug development company focused on using stem cell technologies to identify treatments for muscle diseases. After generating a series of FSHD-affected human embryonic stem cell lines (supported by FSHD Global), Biocells developed a method for generating muscle cells from stem cells in a dish, yielding an unlimited source of FSHD-affected muscle cells for drug screening (supported by Friends of FSH Research). The group has since identified drug candidates that silence DUX4 expression in FSHD muscle, including GBC0905, which received FDA Orphan Drug Designation in 2018 for the treatment of FSHD. Amanda and the Genea Biocells team are now working to complete the studies necessary to bring GBC0905 to clinical trials.
- muscular dystrophy
Join us on Thursday, November 1, 2018, for our live interview with Skylar Conover. As 2015 Ms. Wheelchair USA, Sklyar shared her journey as a young woman diagnosed with FSH muscular dystrophy and has become a national advocate. Since then, Skylar has married and become a parent. Recently she acquired a service dog. She’ll share her life story and observations about living with FSHD, and most recently, working with a service dog.
Taylor Quigg is a wife and mother of two who lives in the suburbs of Philadelphia. Taylor was diagnosed with FSH in 2014 when she was eight weeks pregnant with her second daughter. She has worked hard to overcome the label and show her diagnosis doesn’t define her. Taylor is a proud Network Marketing Professional for a global health and wellness company. She works tirelessly everyday to spread awareness of FSH and to show others anything is possible with enough determination and drive. Her story has inspired so many we know it will inspire you.
Kristin Duquette, former U.S. Paralympic team athlete and disability rights advocate. A former FSH Society staffer, she served as a confidential assistant to the chief of staff of the National Endowment for the Arts under the Obama administration and currently works as a program analyst for the Department of Homeland Security. Join us as we chat with Kristin about her career and advocacy work.
Beth Johnston and Leigh Reynolds, the dynamic duo who are spearheading the FSH Society’s national chapter program.
Led by volunteers and supported by FSH Society staff, the Chapter Program is our greatest opportunity to fund more research, connect more patients, and advance more progress. The FSH Society is investing in this program because we believe there is great power in community. Working together, we inspire each other to go farther and reach higher than we could going it alone.
Currently there are 12 chapters in development and five Walk & Roll to Cure FSHD events underway. Volunteer leaders from across the country have stepped up to make a very real difference for all those impacted. FSH Society staff is providing training, tools and support to ensure their success. And this is just the beginning; by 2020 the FSH Society plans to have 20 chapters from coast to coast.
On July 25th at 8pm Central, Beth and Leigh will speak about the new FSH Society Chapter program; how it was conceived, how it is being supported, and how you can get involved.
Join us for an interview with Curt Calder, co-founder of AnsonCalder, a leather accessories company that weds artisan materials and fine craftsmanship with minimalist, functional designs inspired by his experiences as a busy finance professional living with FSH muscular dystrophy.
Curt’s love for intelligent design has quickly grown a cult following for Anson Calder, according to the company’s website. “Brand loyalists share his enthusiasm for everything being in its proper place—visible, accessible, and organized. In a fast-paced world where just getting from point A to point B can feel like a marathon, Curtis’ goal is to eliminate the little songstress of daily life—like rummaging through your messy bag or struggling to retrieve your credit card when your hands are full.”
Read more about Curt Calder’s story here.
This month, our host Tim Hollenback has a conversation with Dave Lukas, an Illinois native who was diagnosed with FSH muscular dystrophy a little over three years ago. Dave has shared aspects of his journey with bracing and eloquent candor (and humor) over his Facebook page [LINK = https://www.facebook.com/dave.lukas.14]. Dave shares his story about how he transformed himself from feeling powerless to powerful [LINK TO BLOG POST] by volunteering for research toward a cure for FSHD, and as an advocate and leader in the Chicagoland FSHD community. We look forward to hearing his story!
Join us on April 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with stress and anxiety. You can stream the show on BlogTalkRadio or listen and ask questions on the air by calling (949) 270-5953.
Dr. Egert began her own personal study and mindfulness practice in 2002 and has trained in MBCT and Mindfulness Based Stress Reduction (MBSR) as well with other mindfulness-based psychotherapies such as Acceptance and Commitment Therapy (ACT) and compassion focused interventions. She will be offering a free workshop at this year’s FSHD Connect conference in Las Vegas, and our show gives our listeners an opportunity to learn why she feels mindfulness is helpful for living with FSHD and loving and/or caring for people with FSHD.
For further information, see Dr. Egert’s course listings on the NYC Mindfulness Meditation Collaborative Website: http://www.mindfulnessmeditationnyc.com/mbsr-nyc-teachers/jennifer-egert and her personal website: www.jenniferegert.com
Join us for a live, on-air support group session with the regulars at CT Connections, the FSH Society’s member group based out of Connecticut.
For the past few months, the group has been meeting monthly via video conference to share friendship, humor, and a wealth of helpful tips for overcoming the impediments and inconveniences imposed by FSHD. A constant refrain of the group has been, “This is so great! We should be recording and sharing this with the rest of the community!” Their wish is our command. This month, our intrepid host Tim Hollenback and Connecticut Connections will be gathering on-air and inviting you to participate! Among those joining us will be Shawn Welch, known to many of you on Facebook.
Our special guest in February will be Dr. Tahseen Mosaffar. Tahseen Mozaffar, MD, is director of the MDA ALS Neuromuscular Center at the University of California Irvine Medical Center. As a nationally recognized expert in his field, Mozaffar serves as a principal investigator and co-investigator in clinical trials of novel therapeutic drugs for FSHD, ALS, and other neuromuscular conditions. His research interests include the pathophysiology of neuromuscular disorders, encompassing nerve dysfunction and the molecular and cellular aspects of muscle atrophy. A fellow of the American Academy of Neurology and past president of the Orange County Neurological Society, he sits on numerous committees of professional associations and medical research foundations. Dr. Mozaffar is a frequent lecturer, guest speaker and presenter at medical grand rounds, professional meetings and research conferences. He also supports public awareness of advances in neuromuscular research by speaking at gatherings of patients and caregivers.
This episode of the FSH Society Radio show we welcome Justin Skeesuck and Patrick Gray form the book and film "I'll Push You."
Over the past 20+ years, a progressive neuromuscular disease has slowly taken away Justin’s ability to use his arms and legs. From each morning until night, Justin requires daily assistance in every aspect of life such as eating, getting dressed, bathing and even using the restroom.
In the spring of 2012, Justin learned about the Camino de Santiago while watching Rick Steves on Public Access TV. Soon after, Justin asked his lifelong friend, Patrick, what he thought about tackling the ancient pilgrimage. Patrick's response was simple and direct. He said, “I’ll push you.”
Justin and Patrick will tell us about their 500 mile journey from the southwest of France to the Cathedral in Santiago; over several mountain ranges like the Pyrenees, through rivers, and across the vast “desert of Spain" called the Meseta.
Justin and Patrick use their heartfelt storytelling to share the comical details of their journey… the joys, the struggles, the beautiful relationships, and the lessons they learned in faith, hope, love and friendship.
On this episode, the featured guests are you the listener! We’ll be joined by FSHD ambassadors Carden Wyckoff and Lexi Pappas, who each have great stories to share. Host Tim Hollenback will take calls live on air from all of you who want to share your stories. If you have FSHD or are a family member or friend of someone who does, we want to hear from you. June Kinoshita from the FSH Society will join Tim to answer your Facebook, Twitter, email and live chat room questions and comments. This show will be a support group for you. We also will share current news and events with the FSH Society.
We are thrilled to welcome actor Max Adler, FSH Society honorary board member and advocate. The 31-year-old film and television actor first achieved national recognition for his role as Dave Karofsky on the hit television series Glee. Another prominent role was the character Tank on the television series Switched at Birth. Max also appeared in the Clint Eastwood-directed film Sully, starring Tom Hanks.
Max became an advocate for the FSH Society's Celebrity Walk 'n' Roll, which was held in Irvine, California, from 2011 to 2014. Join us to hear his FSHD story and learn about his career and current projects.
Mark Stone began his tenure as CEO and President of the FSH Society in September. Stone is a leading executive in health care-related non-profit organizations, having served as an executive leader of research-focused patient advocacy groups for the past 13 years, most recently as the CEO of NephCure Kidney International. During his tenure at NephCure, Stone launched the NephCure Accelerating Cures Institute (NACI), a drug discovery initiative anchored by a clinical trial network comprising more than 35 sites, which seeks to expedite potential treatments for nephrotic syndrome.
This month’s radio show guest is Steven Blier, a pianist and go-to coach for some of the world’s most celebrated singers. Joining us also will be George Pollock, to tell us about his experiences riding in the cross-continental Race Across America this summer with Team FSHD Cycling.
In an interview with the New York Times, Steven says “Muscular dystrophy is not something I would recommend. But it is an amazing teacher. It shows you what you are made of. To live your life in a wheelchair, you have to man-up. To go on stage takes some guts. But you find your confidence and you become your own advocate.”
Mr. Blier enjoys an eminent career as an accompanist and vocal coach. His recital partners have included Renée Fleming, Cecilia Bartoli, Samuel Ramey, Lorraine Hunt Lieberson, Susan Graham, Jessye Norman, and José van Dam, in venues ranging from Carnegie Hall to La Scala. He is also on the faculty of The Juilliard School and has been active in encouraging young recitalists at summer programs, including the Wolf Trap Opera Company, Santa Fe Opera, and the San Francisco Opera Center.
Mr. Blier’s extensive discography includes the premiere recording of Leonard Bernstein’s Arias and Barcarolles (Koch International), which won a Grammy Award.
Charis L. Himeda, PhD, is Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle disease for many years, and is currently using cutting-edge technologies to examine mechanisms of epigenetic dysregulation in FSHD muscle cells and explore potential avenues of therapy.
In 2016, Dr. Himeda received the FSH Society's Young Investigator Award for her contributions to the ground-breaking 2015 paper published in Molecular Therapy, “CRISPR/dCas9-mediated transcriptional inhibition ameliorates the epigenetic dysregulation at D4Z4 and represses DUX4-fl in FSH muscular dystrophy.” Her co-author Peter Jones praises her as “a truly dedicated and brilliant scientist (and award-winning writer on the side).”
A frequent contributor of meeting reports and articles to the FSH Society newsletter, Dr. Himeda is also dedicated to advancing public understanding of research. Following the publication of the CRISPR study, she was interviewed by the Washington Post, The Huffington Post, and the Boston Business Journal, and moderated a discussion for FSHD patients regarding the details and implications of the work.
Our guest tonight is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an adviser and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is eager to promote the Society in its search for a cure and to offer support and guidance for patients and their families. On our show tonight, she will respond to questions and comments shared by our Facebook communities.
Carol is a graduate of Bryn Mawr College and the University of Connecticut School of Medicine. She completed her residency in psychiatry and a fellowship in biological psychiatry at Massachusetts General Hospital, and is a graduate of the Boston Psychoanalytic Society and Institute. She resides in Cambridge, Massachusetts, with her husband Adam, a chef, and two sons.
Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis secret until recently? How does he manage the intense travel and demands of his job? Why did he create the foundation in 2011, and what is its mission? What’s next for Chris?
Tonight we present the first live show of FSH Society Talk Radio. Host Tim Hollenback welcomes featured guest George Pollock. George is leader of Team FSHD Cycling, which will be competing in the grueling RAAM (Race Across America) in June. George will talk about what is entailed in preparing and training for such a distance event. We invite you to participate in the show and send us your questions for George. Also in this show, Tim shares his personal fight and diagnosis with FSHD. Learn about the upcomingWorld FSHD Day on June 20, as well as the FSH Society Family Day conference coming up in June. All this and more!
This is the first episode of FSH Society radio. First you ask, "What is FSHD?" It is Facioscapulohumeral muscular dystrophy (FSHD). FSHD gets its name because the progressive loss of skeletal muscle is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles. This is a progressive disease and it has no cure or treatment...yet. In each episode, I invite you to come with me and share in my journey of not only my personal battle against this disease, but the story of the hundreds of thousands of others affected by it.
This episode I welcome the COO and executive director of the FSH Society. We talk about the science and facts of FSHD. We discuss the beginning of the FSH Society and the future. June and I explore the race for a cure and with the help of the FSH Society. June talks about the role that the FSH Society plays in helping people connect that are looking for support. I will share my personal story of my fight with FSHD and invite you to do the same. I also inform you of some current news and events in the FSHD world.