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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/