Welcome to the Columbus Chapter!
Thank you for visiting the Columbus Chapter of the FSHD Society which officially launched in July 2018. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
The Walk & Roll
It’s official – the 2nd annual Walk & Roll to Cure FSHD is open!!! Mark your calendars for Saturday, September 14th, 2019, at the Coffman Park Pavilion in Dublin, OH. We hope you’ll be able to join us for this awesome event where we raise awareness, build our community, and raise funds toward the cure. You can register to participate, or support our event by making a donation HERE!
Until then, here are some photos from our inaugural event in 2018 to get you in the spirit:
Check out some great photos from our Chapter meeting on Nov. 11th, 2018:
Upcoming Events › Columbus Chapter Events
Join host Tim Hollenback on October 30, 2019 on Facebook Live for a conversation with the fantastic Alan Brown. Originally scheduled for July 31, the show had to be rescheduled due to technical difficulties. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL). Alan Brown of NFL Films. Alan has FSHD in his family. “My great-grandmother, grandmother, mother and…Find out more »
Join radio host Tim Hollenback via Facebook Live! on Wednesday, November 20, at 9:00 PM EST for TBD.Find out more »
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…Find out more »