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 research and treatments.

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.