Join us on Wednesday, December 27, at 9:00 pm EST / 8:00 pm CST for our live radio show. Tune in HERE. On this episode, the featured guest is you, the listener! Call our host Tim Hollenback at 949-270-5953 to ask questions and tell us about you. We’ll be joined by FSHD ambassadors Carden Wyckoff and… Read More »
FSH Society Talk Radio, On-air Support Group
FSH Society Talk Radio on mindfulness in coping with FSHD
LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is… Read More »
How my progressive disease taught me that it’s okay to be human
By Kristin Duquette My body constantly changes and at times, I feel like there’s nothing I can do about it. Every time I lose another piece of mobility, my mind flashes back to memories and experiences of loss contributed to my body and this condition. I break down because sometimes it’s just too much to… Read More »
Reflecting on FSHDselfies
By Mia Archuleta, Granbury, Texas I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my journey since posting them. I attend a Bible study group that I absolutely love. In the year that I have been there, everyone has welcomed… Read More »
The Truth Hurts, but I Can Bear It
The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?”… Read More »