TikTok, the video-sharing app formerly known as musical.ly, is the world’s fastest growing social networking platform. This year, TikTok is participating in World FSHD Day on June 20th. The relationship was cultivated by our friends at FSHD China. TikTok will be reaching out to Chinese pop stars and other celebrities, who will share a 15-second… Read More »
TikTok to participate in World FSHD Day
How to launch your own chapter or Walk & Roll
Have you thought about what you can do in your own backyard to serve FSHD patients and families in your community and advocate for greater awareness and resources to develop treatments? Look no further. Our community development team of Beth Johnston and Anna Gilmore walk you through the ABC’s of starting a chapter and Walk… Read More »
A surprise $50K gift
From a simple act of kindness When Jim Chin, chair of the FSH Society board of directors, donated funds for travel scholarships so that 20 patients could attend our 2018 FSHD Connect conference in Las Vegas, he had no inkling of the dividends his gift would yield. $50,000 to be exact. That’s the amount of… Read More »
$100,000 matching gift challenge!
The time to act is now If we deliver on our promise to have therapies to our families by 2025, it will be because of your donation today. With your continued support, this year we will: begin our Therapeutic Accelerator Project to clear the path to clinical trials and FDA approval of new treatments; expand… Read More »
Organizing a Walk & Roll ─ if I can do it, so can you!
by Susan Aumiller, Powell, Ohio Last year, soon after my son and husband were diagnosed with FSHD, I called the FSH Society and said I’d like to organize a fundraiser. Within weeks, I found myself launching the first Walk & Roll to Cure FSHD in the state of Ohio. I had never done anything like… Read More »