FSHD Straight Talk with Tim Hollenback

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...

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...

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! W...

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, upcomin...

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...

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...

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 sh...

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 a...

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 m...

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 r...

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...

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 auth...

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.…