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.…

We are kicking off the new year with special guest MaRynn Taylor, a rising star in country music. The Michigan native signed with Nashville-based Black River Entertainment in 2019 and released her first single, “Dads and Daughters,” a beautiful, heart-tugging song dedicated to her father, who has FSH muscular dystrophy. Watch below. Bring kleenex. Plus we chat about New Year's resolutions and what is new in the world of FSHD Society.

In our final episode for 2020, we are joined by our fabulous fitness gurus Mitch Wade and Bill Herzberg for their exercise insights. Stock up on ideas to up your fitness game in the new year! Mitch is looking for your input on stating a FSHD exercise group. Please email Mitch at [email protected]. Let him know if you are interested and what time a group training session would work best for you. Thank you so much for supporting the show in 2020! See you next year!

Our guest this week is Missy Dixon, mental health counselor at the University of Utah who has worked with FSHD families. She’ll talk about coping mechanisms for adults and children living with FSHD, as well as for their family members. We’ll also discuss the importance of social networks and support. Missy gives us great tools to use when handling our Mental Fitness.

On this episode of the FSHD Society radio show we welcome Eddie Barocas. Ed is an extraordinary champion for underdogs, who until recently served as Legal Director of the American Civil Liberties Union of New Jersey. You can read more about him on our blog. He will talk about his amazing life and how FSHD may have helped make him who he is.

On this episode of the FSHD Society radio show we share our thanks. Tim hosts with input from the listeners great Thanksgiving stories. Stories about Thanksgiving cooking disasters and what to be thankful for in this covid-19 time. Plus we touch base on what is coming up in the FSHD Society community.

This episode we welcome in again Bill and Mitch. We talk again about the physical side of FSHD. We key in on keeping a routine and dealing with the change in season. It is tough to keep yourself moving and healthy as it gets cold out. Mitch and Bill give some great advice to help. They also talk about specific workouts to help with what Mitch calls the "second core". Your ankles and feet are key to balance and movement. Mitch gives us great tools to help.

This week we welcome back Dr. Jen Egert, psychologist and mindfulness coach. This episode Dr. Jen Egert goes through a mindful practice. She teaches us how to get started in mindfulness and the amazing benefits it offers. Just listening to her will calm you down. She offers wonderful insights into our lives and minds.

Our guests on this episode are Mitch Wade and Bill Hertzberg, our fitness gurus. They’ll be demonstrating some of the workouts that have helped Bill with his FSHD symptoms and answer your questions. Bill and Mitch focus in on balance and stability. I ask the question can a person with FSHD work to regain their agility? Mitch's answer may surprise you. All this and more!

Our guest on this episode is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. In our webinar last week, White discussed her perspective on the impact of the FSHD community’s role in therapy development. This is your chance to ask any questions you may have. White previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people living with myotonic dystrophy. In that role, she led strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the foundation and its staff. Molly has over 25 years of leadership-level experience building, implementing and running award-winning domestic and international community programs for organizations in both the private and nonprofit sectors.