Art lets me grow

By TIffany Zimmerman, Deltona, Florida I don’t think any of my work as an artist really focuses on my having FSHD. I do feel, however, that my art and creativity are among the major things in my life that keep me mentally balanced and uplifted. One of the hardest things about dealing with FSHD is … Read more of “Art lets me grow” »

International FSHD Patient Advocacy Summit

Marseille meeting convenes delegates from 11 nations BY SHEILA HAWKINS, TRUSTEE, MUSCULAR DYSTROPHY UK FSH muscular dystrophy affects people of every nation and ethnicity, and the effort to develop treatments will undoubtedly require the participation of patients from multiple countries. With international clinical trials already under way and more on the horizon, it was more … Read more of “International FSHD Patient Advocacy Summit” »

2019 FSHD International Research Congress Highlights

At the 26th annual FSHD International Research Congress (IRC) this June 19-20, held in a 19th-century palace overlooking the harbor of Marseille, the 180 attendees were treated to a spectacular panorama of France’s second-largest city. From the massive 17th-century stone ramparts of Fort St. Jean to the cutting-edge architecture of the Museum of European and … Read more of “2019 FSHD International Research Congress Highlights” »

More than meets the eye (and ear)

by Jenny Hasenjaeger, Bennet, Nebraska Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes, and those on the listening end have been loving every note. Accentuating his singing talent are his skills on the piano, violin (wife, … Read more of “More than meets the eye (and ear)” »

World FSHD Day highlights

World FSHD Day was a HUGE Success! Thank you to all of you who hosted events and participated! Here are a few highlights: The Tampa Chapter and George Pollock Raced Across America with Team FSHD Skyland Trail The Atlanta Chapter lit up the King & Queen Buildings The New England Chapter lit up the Zakim Bridge The Arizona and Utah Chapters had … Read more of “World FSHD Day highlights” »

Strength in Determination

Editor’s note: We are proud to share, with the author’s permission, an essay by eighth grader Sam Ray of Willcox, Arizona, who was a winner this year of the annual, national essay contest, “Breaking Barriers: In Sports, In Life.” The contest was created by Scholastic and Major Baseball League in honor of Jackie Robinson, to … Read more of “Strength in Determination” »

Many “Firsts” for the 26th Annual FSHD International Research Congress

The world’s premier conference on the rare muscle disease sets attendance records as it convenes for the first time in Europe  The FSH Society announced the opening today of its 26th annual International Research Congress (IRC) in Marseille, France. The conference is widely seen as the premier global platform for the discussion and dissemination of … Read more of “Many “Firsts” for the 26th Annual FSHD International Research Congress” »