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.
2024 Minnesota Walk & Roll to Cure FSHD
Sunday, September 22, 2024
Location: Normandale Lake Bandshell, 5901 West 84th Street, Bloomington, MN
Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and via email, and invite others to join you in getting us closer to a cure!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
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!
The 2023 Walk & Roll to Cure FSHD
Our 2023 annual Minnesota Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
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
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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.
