Category Archives: FSH Society News

Ohio FSHD Family Day Conference

Strengthening our network in the Midwest

The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research advances with patients and families in the region. Patients and caregivers shared their observations and experiences of living with FSHD. Continue reading

FSH Society awards over a half million dollars for new research

The FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced this spring that it has committed $550,792 in funding to six research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record-breaking $1.36 million awarded for total research funding in 2016.

“These grants are a testament to the dedication of researchers within the FSHD community committed to understanding and solving how FSHD works through high-quality peer-reviewed research,” said Daniel Perez, president, CEO & CSO of the FSH Society. “With these grants we look to further increase our understanding of the inner workings of FSHD and build upon our success in 2016, which would not have been possible without the generosity and sustained support of donors, Society management and staff, our Board members, and volunteers.” Continue reading

Our new Physical Therapy brochure

Hot off the press, here’s our updated Physical Therapy brochure! Co-written by leading FSHD experts Katy Eichinger, PhD, Shree Pandya, PT, DPT, MS, and Wendy King, PT, the brochure provides an excellent review of the literature on PT and exercise and practical guidelines for patients and therapists. If you would like to order copies, please send your postal address to You can also download the brochure here (but it’s worth having a supply of the printed ones to share with your PT, family members, etc.).

Fourth Annual Songs in the Key of Steven Blier (PHOTOS)

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We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts out with our beloved Steven Blier. Thank you to all who helped, supported, participated! This is how we build and strengthen our community!

Team FSHD Cycling crosses the finish line!

And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn’t be more proud, and humbled, by this incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the entire FSHD community, THANK YOU. 

With gratitude to all the companies that generously sponsored Team FSHD Cycling!

Team FSHD Cycling’s RAAM has begun!


We are more proud than we can say to have Team FSHD Cycling embark today on the 3,000-mile Race Across America to raise awareness and funds for our shared mission to beat FSH muscular dystrophy. Thank you to all who raised funds and sent photos to “put a face” on Team FSHD Cycling’s support vehicles. Over the next 7 days, we challenge you to help us get a donation from all 50 states!! View Team FSHD Cycling’s daily location tracker.

And we're off! Track our progress on the Race Across America website. #fshsociety #raam #cycling #fshdcycling

A post shared by Team FSHD Cycling (@fshdcycling) on

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FSH Society Talk Radio – A chat with Chris Carrino, voice of the Brooklyn Nets

Wednesday, May 31, 2017. 10:00 pm EST / 9:00 pm CST.


Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis secret until recently? How does he manage the intense travel and demands of his job? Why did he create the foundation in 2011, and what is its mission? What’s next for Chris? Post your questions in the comments section and we’ll ask him during the show! Or you can call in and talk to him live on the air. Continue reading

Make an Impact This World FSHD Day With Our Orange Slice Selfie Campaign

The FSH Society is excited to celebrate the Second Annual World FSHD Day and join the global effort to raise awareness to FSHD this June 20th. To build upon last year’s success, we’re calling upon you—our biggest supporters—to spread the word!

We ask that you join us along with members of FSHD Champions in participating in our Orange Slice Selfies campaign. With orange as the official color of World FSHD Day, we’re asking that supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay.

Download World FSHD Day Toolkit here.

Additionally, we encourage supporters throughout the country to reach out to their local Department of Public Works in an effort to light up notable landmarks (bridges, buildings) orange in honor of patients and families. With Boston’s famed Zakim Bridge set to be lit orange on June 20, we would be thrilled to have the country from coast to coast lit orange!

Within this year’s 2017 World FSHD Day Toolkit, you will find example social posts to share your selfies, an email template to share Orange Slice Selfie photos with reporters at your local newspaper, and materials to assist in contacting your local Department of Public Works to light up your local landmark orange.

Please find an editable Word document of the toolkit below, and don’t forget to share your photos with us using #WorldFSHDDay on June 20! Please feel free to contact us at with any questions.

Download World FSHD Day Toolkit here.

Spring $50K matching gift challenge!

Your donations are vital for helping the FSH Society overcome its challenges and meet its goals. We must invest in deciphering FSH muscular dystrophy so that we can aim treatments at the correct targets, even as we build the infrastructure to ensure that clinical trials will have meaningful results. A group of generous benefactors has pledged to match your donations up to a total of $50,000 during our spring campaign. Help us rise to this fundraising challenge and make a gift now.

If your company matches donations, you could quadruple your impact!  Continue reading