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… Read More »
More than meets the eye (and ear)
World FSHD Day 2019 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… Read More »
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,… Read More »
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… Read More »
Bay Area Family Day Video and Slides
Here are the slides and videos from the Bay Area Family Day conference, held at the Li Ka Shing Center, Stanford Medical School, on Sunday, April 28, 2019. Click on… Read More »