FSHD Straight Talk with Tim Hollenback

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 bo...

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!  Fi...

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 C...

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...

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...

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 Societ...

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 Tuesda...

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 Jam...

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...

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...

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...

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...

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 podcas...

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 m...

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. PA...

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 Barri...

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...

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 Thurs...

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...