FSH Society Ambassador Ryan Levinson just transmitted this video from his berth in Fakarava, a tiny atoll in the Tuamotu chain of French Polynesia! He shares how he has adapted his movements to get around his sailboat. FSH muscular dystrophy won’t stop him from living his life to the fullest. Read more about Ryan here. What tricks have… Read More »
Here are selected questions from an FSH Society webinar held on October 1, 2015, with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of… Read More »
By Lexi Pappas [youtube=https://www.youtube.com/watch?v=C8qyAHqydGs] Every year my school holds a public speaking colloquium where over 50 people participate. It is a competition for students to prepare a 3 minute speech on any topic they would like. It can be motivational, inspiring, funny, informational, etc. I decided that this would be my year to compete in… Read More »
Volunteering for research, feeling the weight of responsibility By David Lukas, Village of Lakewood, Illinois I was diagnosed with FSHD in April 2015. In October 2015, I participated a clinical research trial in Rochester, New York, at the University of Rochester Fields Center for FSHD Research. I am the final participant for this study, which… Read More »
Check out this wonderful short documentary about Pierre, a 40-year-old who has shared this intimate view of what it is like to live with facioscapulohumeral muscular dystrophy.