FSHD Straight Talk with Tim Hollenback

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 wha...

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 mwadefit@gmail.com. Let him know if you are interested and what time a group training session would work best for you. T...

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 t...

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 advanc...

Our guest on this episode is Kent Drescher, PhD, co-director of the FSHD Society’s Bay Area chapter and a retired clinical psychologist. He will talk about acceptance and commitment therapy (ACT), which has been shown in a clinical trial to be beneficial to people with FSHD. He will discuss his own experience of living with FSHD, and share his past work working with veterans. Kent dives deep into...

special guest is Josh Bergmann , multi-talented singer-songwriter-mandolinist. His band Rose Valley Thorns’ website states that “Joshua Bergmann’s immense passion for music brought The Rose Valley Thorns together. While pouring himself into playing mandolin and leading the vocals for this band, Joshua is also a respectable multi-instrumentalist, performer, and songwriter in various other genres. P...

Our guests are Jenny and Tony, a married couple who share information and offer encouragement on their YouTube channel in the context of their interabled relationship. Tony’s life with FSHD has set them on a journey to discover better ways to problem solve together and live life to the fullest. Learn more about them here .

Our guests tonight are, Kathryn Wagner, MD PhD, and her colleague Doris Leung, MD PhD. Dr. Wagner has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and Neuroscience at the Johns Hopkins School of Medicine, she has established one of the world’s leading centers fo...

Our guest tonight is Dr. Jen Egert, a psychologist living with FSHD, who will discuss strategies for maintaining peace of mind in these stressful times. We discuss the details of living with emotions. I share my personal struggle with anxiety and negativity. Dr. Egert and also discuss the topic of FSHD defining us. This is a very valuable show for all those that listen. This is not just an episode...

This episode of the FSHD Society Radio Show we chat with Beth Johnston and Leigh Reynolds. We talk about the FSHD Society’s biggest fundraising event of the year, the Walk & Roll to Cure FSHD on September 12. Tune in to learn how you can participate. To join the Walk N Roll event  https://www.fshdsociety.org/fsh-events/walk-roll-to-cure-fshd/

On this episode of the FSHD Society Radio Show the guest is Dr. Anthony Romeo. Dr. Romeo is a distinguished orthopedic surgeon who is one of the leading experts on surgery to stabilize the shoulder blade (scapula) in individuals with FSH muscular dystrophy. Read more about his impressive career on his website . He was last week’s FSHD University webinar speaker and is available tonight to answer y...

Our guests on this episode are our favorite exercise mavens, Bill Herzberg and Mitch Wade. They’ll be sharing their experiences with workouts that have improved Bill’s strength, range of motion, and endurance. Each month Bill and Mitch talk to us about a exercise that will help us stay moving. This episode is about the shoulders. Visit Mitch at @mitchwadePDX on Instagram.

This week’s guest is Frank Hanley, the FSHD Society’s South Carolina Chapter Director.  Frank is a certified Qigong instructor (pronounced  chee gong) and Kung Fu teacher.  Frank will discuss how he uses his daily martial arts practice (qigong and kung fu) to fight back against FSH. 

This week’s guests are Howard Chabner, FSHD Society board vice-chair and retired disability rights lawyer, Melissa Riess, a staff attorney at Disability Rights Advocates in Berkeley, and Dani Liptak and Carden Wyckoff, who have been outspoken advocates for disability rights in the community. We’ll reflect on the impact of the ADA and the many challenges that remain in the fight for full inclusion...

This episode guests are Romesh Subramanian and Molly White of Dyne Therapeutics. Dyne recently announced that it is ramping up its FSHD therapeutic development program.  Romesh brings extensive drug discovery, translational medicine and leadership experience to Dyne. He formerly led new modality discovery research at Alexion Pharmaceuticals, focusing on nucleic acid, antibody and enzyme replacemen...

This month’s guests are Bill Herzberg and Mitch Wade , FSHD patient and fitness trainer, respectively, who are making waves in our community with their weekly fitness webinars . They’ll be discussing the strategies they have worked out over the years to successfully address a variety of issues that have resulted from Bill’s FSH muscular dystrophy. 

Our guest this week is Lynn Stevens , Director of Workplace Development for Goodwill of North Louisiana. Lynn has been serving the nonprofit sector for over 20 years. She has extensive knowledge, expertise in leading and guiding many types of local, regional and national organizations. “My passion is serving others and creating positive change,” she says. Having been diagnosed with FSHD and needin...

This month’s guest is Carden Wyckoff, FSHD Society board member and supreme champion of accessibility and leader who laughs in the face of limits. With her own podcast, “ Freewheelin’ with CardenOfMilk “, Carden (@cardenofmilk) shines a new light on accessibility and thriving through any challenge. Carden Wyckoff, podcaster “Living with a progressive disease can have so many ups and downs, and my...

This special episode highlights an interview with a great friend of the show Goran Kralj. Goran is the lead singer of the band Gufs and has solo work as well. Goran's resent song, "When This Is Over" keys in on the current time we are all coping with. It is a positive song when we needed it most. I had the pleaseure to talk with Goran about the song creation and other music he is working on.

Join host Tim Hollenback and our guest this month is Julie Cohen, MSc, a senior genetic counselor at the Kennedy Krieger Institute and an Assistant Professor of Neurology at Johns Hopkins University School of Medicine. Julie received her Master’s degree from the Johns Hopkins/National Institutes of Health Genetic Counseling Training Program. With more than a decade of experience, Julie specializes...