Welcome to the Minnesota Chapter!
Thank you for visiting the Minnesota 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 For Lab Day at the University of Minnesota!
Lab Day, presented by the MD Center at the University of Minnesota, is being held on Saturday, March 25th. Please join us for this amazing opportunity!
We will have a table there representing the Minnesota Chapter and the FSHD Society...come by and say hi!
View the full flyer here!
Join us for the 2023 Walk & Roll to Cure FSHD
Mark your calendar for Saturday, September 16th, 2023 for our Annual Minnesota Walk & Roll to Cure FSHD. Location to be announced soon. Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!
Learn more about the 2023 Walk & Roll to Cure FSHD here!
To contact us directly, please email: MinnesotaChapter@fshdsociety.org
Follow our local chapter on Facebook for news and notes about regional happenings. And please become an official member of our chapter to ensure you never miss a thing! Simply fill out the form in the right sidebar.
Upcoming Events
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... Read More »
FSHD Radio: Hot off the Press – Mel Hayes of Fulcrum Therapeutics on the REACH Trial
Facebook and YouTubeThursday, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum... Read More »
Feeling Fit with FSHD – Why exercise?
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for our second session of... Read More »
Jacob Wise
Chapter Director
I’m Jacob Wise. I live in Edina, MN with my wife and three children.
I was diagnosed with FSHD in 2001 when I was 23 years old. As my condition progressed I felt an urge to become an active contributor within the FSHD community. So when the opportunity came to help create a Minnesota Chapter, I was excited to take part. I look forward to meeting others affected by FSHD and fostering a local support group. Together we will find a cure.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
