by Allison Calder, Salt Lake City, Utah This year, the Volunteer Leadership Summit came at just the right time for me. I had hit a slump as a chapter leader,… Read More »
Re-igniting my passion
Teen with FSHD is in top 40 of Science Talent Search
Our very own Heloise Hoffmann, leader of the Southwest Florida chapter and Walk & Roll, is a science rock star! The Society for Science named her a top 40 finalist… Read More »
FSHD Canada Foundation awards $2.8 million to CTRN
by June Kinoshita, FSHD Society The FSHD Canada Foundation, a close partner and fellow traveler of the FSHD Society since its founders Neil Camarta and Craig Kelley first met in… Read More »
Talking to my FSHD
by Haviva Ner-David Part II of excerpts from Dreaming Against the Current. I decided to talk directly to my disease. After thirty-two years, it was about time. “Are you willing… Read More »
Extraordinary Measures – Updating the standard of care for FSHD
by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us…. Read More »