FSHD Straight Talk with Tim Hollenback

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, Hol...

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 23...

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 p...

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...

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 pra...

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,...

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 o...

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...

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...

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 collect...

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 fam...

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 meaningf...

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 ser...

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 Thur...

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 eac...

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 S...

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 th...

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...

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 he...

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 mon...

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!