FSHD Straight Talk with Tim Hollenback

Our special guest in February will be Dr. Tahseen Mosaffar. Tahseen Mozaffar, MD, is director of the MDA ALS Neuromuscular Center at the University of California Irvine Medical Center. As a nationally recognized expert in his field, Mozaffar serves as a principal investigator and co-investigator in clinical trials of novel therapeutic drugs for FSHD, ALS, and other neuromuscular conditions. His re...

This episode of the FSH Society Radio show we welcome Justin Skeesuck and Patrick Gray form the book and film "I'll Push You." Over the past 20+ years, a progressive neuromuscular disease has slowly taken away Justin’s ability to use his arms and legs. From each morning until night, Justin requires daily assistance in every aspect of life such as eating, getting dressed, bathing and even using the...

On this episode, the featured guests are you the listener! We’ll be joined by FSHD ambassadors Carden Wyckoff and Lexi Pappas, who each have great stories to share. Host Tim Hollenback will take calls live on air from all of you who want to share your stories. If you have FSHD or are a family member or friend of someone who does, we want to hear from you. June Kinoshita from the FSH Society will j...

We are thrilled to welcome actor Max Adler, FSH Society honorary board member and advocate. The 31-year-old film and television actor first achieved national recognition for his role as Dave Karofsky on the hit television series Glee . Another prominent role was the character Tank on the television series Switched at Birth . Max also appeared in the Clint Eastwood-directed film Sully , starring To...

Mark Stone began his tenure as CEO and President of the FSH Society in September.  Stone is a leading executive in health care-related non-profit organizations, having served as an executive leader of research-focused patient advocacy groups for the past 13 years, most recently as the CEO of NephCure Kidney International.  During his tenure at NephCure, Stone launched the NephCure Accelerating Cur...

This month’s radio show guest is Steven Blier, a pianist and go-to coach for some of the world’s most celebrated singers. Joining us also will be George Pollock, to tell us about his experiences riding in the cross-continental Race Across America this summer with Team FSHD Cycling. In an interview with the New York Times , Steven says “Muscular dystrophy is not something I would recommend. But it...

Charis L. Himeda, PhD, is Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle disease for many years, and is currently using cutting-edge technologies to examine mechanisms of epigenetic dysregulation in FSHD muscle cells and explore potential avenues of therapy.  In 2016, Dr....

Our guest tonight is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an adviser and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is eager to promote the Society in its search for a cure and to offer support and guidance for patients and their famil...

Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis se...

Tonight we present the first live show of FSH Society Talk Radio. Host Tim Hollenback welcomes featured guest George Pollock. George is leader of Team FSHD Cycling , which will be competing in the grueling RAAM (Race Across America) in June. George will talk about what is entailed in preparing and training for such a distance event. We invite you to participate in the show and send us your questio...

This is the first episode of FSH Society radio. First you ask, "What is FSHD?" It is Facioscapulohumeral muscular dystrophy (FSHD). FSHD gets its name because the progressive loss of skeletal muscle is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles. This is a progressive disease and it has no cure or treatment...yet. In each episode, I invite you to come...