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 »
Sharpen your orange slicers and polish your selfie sticks! World FSHD Day is on June 20th and you can help us turn social media world orange on that day by sharing the World FSHD Day logo and your orange slice selfie photos. If you want to make an even bigger splash, how about planning a… Read More »
Check out this audio from an interview with Sue Aumiller, director of our Columbus Ohio chapter, with Mark Blazor from Columbus’s top local station, 610-WTVN. Mark read the Columbus Dispatch’s story about Sue and her family and felt compelled to call. When you open one door, others open too. Way to go Sue!
Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter [box] A message from Nicky about the Spotlight series: “Feeling connected to others living with FSHD has been a blessing to me these past 10 years, and now I want to share my amazing FSHer friends with you! This series will introduce you to incredible stories and people… Read More »
Italian brothers’ ordeal sparks a global movement As we approach our third annual World FSHD Day this June 20th, and the international FSHD community plans to flood their social channels with messages and images to bring attention to the day, we’d like to share the backstory of how June 20 came to be World FSHD… Read More »