FSH Society Launches Nationwide Signature Walk & Roll Event

Today, The FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it has established its first-ever nationwide signature event, the Walk & Roll to Cure FSHD. Under the unified brand, supporters anywhere in the U.S. (and beyond) can organize a “walk & roll” event to advocate for public awareness and … Read more of “FSH Society Launches Nationwide Signature Walk & Roll Event” »

Spotlight: Skylar Conover

Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter If you haven’t heard of MS. Wheelchair USA 2015 and FSHer Skylar Conover, you are missing out. There is a reason why I chose her to be my very first official FSHer spotlight profile.  She is such a genuine friend with a sunny personality that so many of … Read more of “Spotlight: Skylar Conover” »

$1.2 Million MDA grant awarded to FSHD Clinical Trial Research Network

When the FSH Society made its initial grant award in 2016 to help establish the nationwide FSHD Clinical Trial Research Network (CTRN), we expected the network would be able to bring in significant additional outside funding. We’re delighted to report that the Muscular Dystrophy Association has now stepped up with a $1.2 million award over … Read more of “$1.2 Million MDA grant awarded to FSHD Clinical Trial Research Network” »

Webinar with Doris Leung, MD PhD, on MRI insights into FSH muscular dystrophy

Here’s the recording of our FSH Society webinar on August 1, 2018. Dr. Leung is a neurologist at Kennedy Krieger Institute Center for Genetic Muscle Disorders and an assistant professor in the Department of Neurology at the Johns Hopkins School of Medicine. She is the principal investigator of an ongoing research study using whole-body magnetic resonance imaging … Read more of “Webinar with Doris Leung, MD PhD, on MRI insights into FSH muscular dystrophy” »

Study uncovers new proteins involved in regulating FSHD-linked gene

By Rachel Tompa / Fred Hutch News Service A new study has revealed more players in the pathway of facioscapulohumeral muscular dystrophy, or FSHD, the most common form of muscular dystrophy. Led by Fred Hutchinson Cancer Research Center biologist Dr. Stephen Tapscott and staff scientist Dr. Amy Campbell, the study, published today in the journal eLife, is the … Read more of “Study uncovers new proteins involved in regulating FSHD-linked gene” »

Our new FSHD 101 video

Our new video explains the basic facts about facioscapulohumeral muscular dystrophy–the symptoms, how it affects those who have it, how it is inherited, and how many people are affected. Watch it and share it to help educate others about FSH muscular dystrophy. Thank you to Taylor Toole for compiling this video. Image and video credits: … Read more of “Our new FSHD 101 video” »

Acceleron Receives FDA Orphan Drug Designation for ACE-083

From BusinessWire CAMBRIDGE, Mass.–(BUSINESS WIRE)–Acceleron Pharma Inc. (NASDAQ:XLRN), a leading biopharmaceutical company in the discovery and development of TGF-beta therapeutics to treat serious and rare diseases, today announced that the United States Food and Drug Administration (FDA) has granted orphan drug designation for ACE-083, the Company’s locally acting “Myostatin+” muscle agent, for the treatment of … Read more of “Acceleron Receives FDA Orphan Drug Designation for ACE-083” »