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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.

aTyr Announces First FSHD Clinical Trial of Resolaris™

aTyrLogoSan Diego-based biotech company aTyr Pharma announced today its first clinical trial in FSHD patients of its investigational new drug Resolaris™. The Phase 1b/2 study is a double-blind, placebo-controlled, multiple ascending dose trial in up to 44 FSHD patients at multiple sites in the European Union.  The exploratory trial is designed to evaluate safety, tolerability, pharmacokinetics and the biological activity of Resolaris™ in adult patients with FSHD.

Resolaris™ is a first-in-class intravenous protein therapeutic derived from a naturally occurring protein released in vitro by human skeletal muscle cells.  aTyr believes Resolaris™ will provide therapeutic benefit to patients with rare myopathies with an immune component characterized by excessive immune cell involvement.

Read more about the trial here.

The FSH Society collaborated with aTyr on recruiting volunteers for a blood biomarker study. You can learn more about that here.

Meet Kyle Bennett, snowboarder

Kyle Bennett is a 23 year old college student in Sacramento, California, who has FSH muscular dystrophy. An outstanding baseball player when he was younger, he had to give that up. And then he discovered snowboarding. “I knew I’d found something that will change my life forever,” he says. His dream is to show younger kids with FSHD that their love of sport doesn’t have to end with their diagnosis. This is his story.

A recap of 2014 research highlights

Check out our press release “A Look Back: FSHD Research Advances in 2014,” which summarizes some important advances in our understanding of medical as well as fundamental scientific issues. These include new data on reduced lung capacity in FSHD patients, the first high-throughput drug screen for potential treatments, clues as to why muscles are targeted by the genetic mechanism of the disease, and promising new mouse models. Read it all here.

Welcome to our new website!

We hope you like it. We have migrated and updated the valuable content from our previous website and added new features, such as a blog (like this post, always visible on the homepage), and a navigation system designed to make it easier for you to find the wealth of information on this site.

Our new website is also more interactive. You can join for free. You can subscribe to receive email alerts about our latest blog posts. You can post comments, share information with others via email, Twitter, Facebook and other social media channels. Please make use of these sharing tools to help educate others and spread awareness.

We have tested everything as far as possible pre-launch, but there may be a few glitches now that we are live. Please report any problems you come across by using our Contact form. Thank you!!

Special thanks to Chel Wolverton, Chris Penn and the team at SHIFT Communications for all their hard work on our new site.

The Truth Hurts, but I Can Bear It

The following essay was written by Zabrisa, a 16 year old FSHD patient who lives in Arizona.

Zabrisa Zelinksi - FSHD Patient

Zabrisa Zelinksi – FSHD Patient

“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?” “Can you hear me now?” “So Zabrisa, your future?”

I’ve gone through an awful lot for the 16 years that I’ve been alive. Diagnosed with an uncommon muscle disease at 1 ½ years old, I had challenges and difficulties served to me on silver platters. I never liked thinking of myself as “disabled” nor did I ever think anything was wrong with me. I was just a person who happened to have a muscle disease. I didn’t let myself think about it; how different I was from the rest of them, how I’d always have to work a little harder to get where I’m going in life. I listened to the doctors rattle off facts about atrophy and degeneration of muscle tissue and scapular fusion surgery but never paid it much heed. I’d deal with it when I got there. Well now I’m getting there and it’s scary. Continue reading

Good Morning America spotlights FSHD

CarlosRomero_MedalCarlos Romero, an FSH Society member, was featured today on Good Morning America in connection with People magazine’s annual “Half their Size” issue, which is out on news stands today. While the magazine focuses on several individuals’ remarkable success in overcoming obesity, Carlos made a point of highlighting the role his FSHD diagnosis played in his personal transformation. You can read more about Carlos in this ABC News report: Mom of 2, Man With Muscular Dystrophy Lose More Than Half Their Body Weight: Continue reading

Rocking the boat with FSHD – The Ryan Levinson Story

“Muscular dystrophy is something I might have,” Levinson said. “But it doesn’t define who I am.”

Ryan Levinson. Photo courtesy of Taura Lynn Photography.

Ryan Levinson. Photo courtesy of Taura Lynn Photography.

Ryan Levinson, of San Diego California, was diagnosed with Fascioscapulohumeral muscular dystrophy (FSHD) in 1996. Though he suffers from muscle loss typical of most people with FSHD, and can no longer hold up his arms, do a sit up, push up, or stand on his toes, Ryan has been a dedicated, world-class athlete and is about to set out on a sailing trip around the world.

After his diagnosis, Ryan’s doctors recommended that he “take it easy” to slow the effects of the disease’s primary symptom: muscle deterioration. He didn’t listen. Continue reading

FSHD Connect conference slides are here!

Here are the slide decks from the 2014 FSHD Connect conference. We are still missing a few and are working to complete the collection.