Mom and Daughter with FSHD featured in Muscular Dystrophy News!

Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD.  Diane is Lexi’s mother and the two live in Massachusetts.  Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness: … Read more of “Mom and Daughter with FSHD featured in Muscular Dystrophy News!” »

Johns Hopkins Studies

Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies!  Volunteering for studies like this helps provide researchers with the information they need to provide better treatments, understand the mechanisms of the disease, and search for a cure. For Family Members (no travel necessary!): The Johns Hopkins Hospital and the Kennedy Krieger … Read more of “Johns Hopkins Studies” »

Imaging study shows positive effects of exercise and CBT on muscle degeneration

In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the same group has published a study demonstrating that not only did patients given AET or CBT feel more energized and active, but that their muscles … Read more of “Imaging study shows positive effects of exercise and CBT on muscle degeneration” »

Ask the Physical Therapist: Car Accidents and FSHD

The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I have FSHD … Read more of “Ask the Physical Therapist: Car Accidents and FSHD” »

Ask the Physical Therapist: Asymmetrical Wasting and Braces

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. With … Read more of “Ask the Physical Therapist: Asymmetrical Wasting and Braces” »

Ask the Physical Therapist: What are the best exercises for different muscles?

The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist.  She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. Q. … Read more of “Ask the Physical Therapist: What are the best exercises for different muscles?” »