2018 FSHD Connect videos!

Our 2018 FSHD Connect conference was held at the Flamingo Las Vegas on June 9-10, 2018. The conference gathered together 400 patients, family members, researchers, physicians, and health experts for a day-and-a-half of intensive learning and community activism. Our meeting featured talks by thought leaders on the latest in scientific research and medical management of … Read more of “2018 FSHD Connect videos!” »

ACE-083 Phase 2 trial results presented at AAN conference

Preliminary results from the ongoing phase 2 clinical trial of ACE-083 in FSHD patients were presented today at the American Academy of Neurology 70th Annual Meeting in Los Angeles, California.The oral presentation by Jeffery Statland, MD, of the University of Kansas Medical Center, included preliminary findings from cohorts 1 and 2 in the open-label, dose … Read more of “ACE-083 Phase 2 trial results presented at AAN conference” »

Webinar: Psychological interventions to improve well-being in muscle diseases

Note: The video will be posted only until May 31, 2018. Download Chris Graham’s Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris Graham, PhD, DPsychol, describes some of the findings from studies looking at what coping methods seem to be beneficial for well-being. He then describes some psychological … Read more of “Webinar: Psychological interventions to improve well-being in muscle diseases” »

Acceleron Announces Preliminary Results from Part 1 of the ACE-083 Phase 2 Trial in Patients with Facioscapulohumeral Dystrophy

We are sharing the following press release from Acceleron Pharma, Inc., regarding the progress of their Phase 2 clinical trial of ACE-083. The FSH Society collaborates with Acceleron to help the company understand patients’ symptoms, motivations, desired outcomes, etc.  – Mean total muscle volume increases of over 12% in the tibialis anterior and biceps brachii … Read more of “Acceleron Announces Preliminary Results from Part 1 of the ACE-083 Phase 2 Trial in Patients with Facioscapulohumeral Dystrophy” »

Testosterone and human growth hormone clinical trial for FSHD

UPDATED October 30, 2017 Researchers at the University of Rochester in New York are conducting a research study to learn more about a potential symptomatic therapy for FSHD. This study may help determine if a combination of drugs (recombinant human growth hormone [rHGH] and testosterone) can be safely given to patients with FSHD and possibly … Read more of “Testosterone and human growth hormone clinical trial for FSHD” »

Bone health and FSHD

by JUNE KINOSHITA, FSH Society 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 … Read more of “Bone health and FSHD” »

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” »

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 … Read more of “Participate in our survey on the impact of FSH muscular dystrophy” »

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. … Read more of “Bone health for FSHD patients” »

University of Kansas seeks volunteers for study

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, … Read more of “University of Kansas seeks volunteers for study” »