Welcome to the Wisconsin Chapter!
Thank you for visiting the Wisconsin Chapter of the FSHD Society!
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.
Join Us the First Monday of Each Month for Our Virtual Chapter Meeting!
Starting on October 7th at 8pm Central, we are excited to announce that we will be running virtual meetings on the first Monday of each month! We will give everyone the opportunity to tell their story in an open forum setting and save time for each member to share what they are looking for in this chapter.
Everyone is welcome! No matter where you are located!
Time: First Monday of each month at 08:00 PM Central Time (US and Canada)
Join from your computer/tablet: https://zoom.us/j/871709382
OR from your phone: 646-558-8656, Meeting ID: 871 709 382
To contact Tim directly, please email:
Don’t forget to follow us on FACEBOOK
Would you like to get involved? Simply fill out the form in the sidebar.
Past Events › Wisconsin Chapter Events
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 »
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not…Find out more »
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children's Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist…Find out more »