Category Archives: Clinical Studies

Bone health and FSHD

Photo credit: By Myohan at English Wikipedia, CC BY 3.0,


Muscle plays an important role in bone health, and diseases such as Duchenne muscular dystrophy have been linked to low bone mineral density (BMD), abnormal bone turnover, and increased risk of fractures. It was not known whether FSH muscular dystrophy also affects bone health, and a new study published in Muscle & Nerve begins to address this question.

This is a topic that many FSHD patients worry about, because weaker muscles lead to more falls, and fractured bones take long recovery times. Reduced mobility, in turn, can further weaken muscles. Continue reading

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 degenerated more slowly than in patients who received standard care.

Strikingly, the effect was largest in the CBT group. CBT often focuses on how your thoughts can influence your behaviors and the choices you make. It is often used to treat patients with chronic illness to improve their functioning in their daily life. Continue reading

Participate in our survey on the impact of FSH muscular dystrophy

We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers.  The survey was developed collaboratively by Acceleron Pharma, aTyr Pharma, the FSH Society, and Jeffrey Statland, MD PhD. Topics include the use of assistive devices, exercise, specific muscle weaknesses, and willingness to participate in various types of clinical trials among others.  These responses will be used to help advance the field and inform the design of clinical studies for new therapies.  

Upon close, the survey data will be compiled and analyzed for insights.  The results will then be summarized into a publication which will be shared by the FSH Society for all to read.  The survey should take approximately 15 minutes.  This is an exciting opportunity to have your voice heard and make a difference in the FSHD community! Thank you for taking the time to help.


Bone health for FSHD patients

Carla Grosmann, MD, of the Kennedy Krieger Institute and University of California San Diego gave this talk about bone health at the FSH Society’s Mid-Atlantic patient network meeting on June 27, 2015. We recommend listening through earphones as the audio did not record well. To download slides, click -> Carla Grosmann MD, Bone health in FSHD.

It you have questions for Dr. Grosmann, please post them in comments and we will forward them to her.

University of Kansas seeks volunteers for study

EIM device is noninvasive and painless.

EIM device is noninvasive and painless.

FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey Statland, MD, of the University of Kansas Medical School.

Recent genetic advances in the understanding of FSHD have identified potential future targets for therapy. Consequently, it is important that to have appropriate tools in place for use in FSHD clinical trials. This study will evaluate a new measure of muscle structure, electrical impedance myography (EIM). Continue reading

UC Davis study is seeking volunteers

Screen Shot 2015-02-07 at 8.05.39 PMWe have been notified that researchers at the UC Davis Medical School are seeking FSHD patients to volunteer for a study. Read here about why participating in research is so important. Your contribution of time and effort is essential to the successful development of treatments for FSHD. Here is information we received from the study coordinator:

Study title: Kinect UO1: Development of Novel Upper Extremity Outcome Measures Using 3-D Vision Technology The purpose of this study is to develop new outcome measures for patients with muscular dystrophy. These outcome measures will focus on upper arm movement and what we call range of motion or reachable workspace. Ultimately our goal is to develop these new techniques to aid in the development of new therapies and create outcome measures for clinical trials. Continue reading

Transforming the landscape for FSHD

Join with thousands of patients, family members and friends in supporting research on FSH muscular dystrophy. The FSH Society helped launch a worldwide scientific effort, and today we stand on the brink of discovering the first treatments. With big opportunities come big challenges, to raise awareness, rally patients and families to volunteer for research, and empower scientists to stake their careers on finding a cure. If you haven’t done so already, please take a minute to register as a member. We can’t win this fight without knowing who and where FSHD patients and families are.