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: Oct 7, 2019 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:
WisconsinChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Would you like to get involved? Simply fill out the form in the sidebar.
Upcoming Events
Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
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 »
FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
Find out more »
TIM HOLLENBACK
Chapter Director
Before my diagnosis in 2016, I never heard of FSHD. The day of the diagnosis I was shocked and scared.
I looked for support. I found it with my wife, Angie and our two sons Carter and Chase. I also found it in the FSHD Society.
I immediately volunteered to host a podcast and helped create a great global presence for others needing support.
I am excited to be the director of the Wisconsin Chapter group and help others locally. This Wisconsin chapter will rise as one to support, educate, and of course raise funds to cure this disease.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!