FSHD is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and FSHD in particular.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
Latest Blog Posts
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 3, and we are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to…
At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have already lost? What if a drug made you stronger temporarily,…
Past Featured Events
Please join us for a spectacular fundraising event in honor of Zachary Phillips! We are raising funds for treatments and a CURE for FSH Muscular Dystrophy. Live auction, car show, raffles, door prizes, music, food & more!!! $10 Wristband fee (covers food plate) Motorcycles: Meet at noon at “House Divided”: 1659 Woodruff Road, Greenville, SC...Find out more »
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made...Find out more »
#GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. We are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of...Find out more »