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. …

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 i…

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, y…

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 sy…

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 inspi…

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 …

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 s…

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 r…

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…

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 diagnosi…

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…

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.By FSHD Straight Talk

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,…

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. Catc…

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 Com…

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 Stan…

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 determinati…

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 W…

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 founde…

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 an…

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!By FSHD Straight Talk

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.By FSHD Straight Talk

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!By FSHD Straight Talk

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.By FSHD Straight Talk

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 …

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!By FSHD Straight Talk

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, mode…

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.…

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 does…

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…

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. …

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 tri…

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 …

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 …

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 adapte…

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 transfor…

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!By FSHD Straight Talk

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 …

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 Nee…

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 Tue…

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…

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 Wo…

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 …

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! …

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 …

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 …

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:…

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.…

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…