Welcome to the Michigan Chapter!
Thank you for visiting the Michigan Chapter of the FSHD Society which launched in early 2023. 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.
____________________
To contact us directly, please email: MichiganChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of the Michigan chapter
Walk & Roll to Cure FSHD 2023
Join us Sunday, September 24, for this year's Walk & Roll to Cure FSHD!
Mulligan's Hollow Lodge
Grand Haven, MI
Check-In: 2:00 pm Walk & Roll Begins: 2:30 pm
About the Walk & Roll
Everyone is welcome at the Walk & Roll, the world's largest gathering of the FSHD community, and our signature fundraising and public awareness event. You can register here!
Exciting News!!
Matt Williams, Purple Heart recipient, and Country music star (he's opened for Billy Ray Cyrus!) will be joining us to share his time and talents at this year's Walk & Roll! You don't want to miss this! For more information on Matt, you can read his bio here.
Upcoming Events
International Walk & Roll Celebration with FSHD Radio
National Virtual Walk , United States10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our... Read More »
Young Professionals – Nutrition and FSHD
Zoom Virtual Meeting , United States11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will... Read More »
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 »
Cassie Harris
Chapter Director
My FSHD journey began in 2021 when my son was clinically diagnosed. The more I learned the more I wondered about myself, as well as my father, having it as well. For just over a decade I had battled with doctor after doctor trying to figure out what was going on with my body. FINALLY I had an answer! However with all three of us facing this disease I also had fear, confusion and many other emotions running through me. I looked to the FSHD Society for information, and a community to help my family understand and navigate it all.
I reside in Saranac, MI. I live with my husband of 20 years and our two teenage children. We enjoy spending time together playing games and going on family trips. I am exited to begin this chapter and for us to build a community to learn with, lean on and navigate this disease together!
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 the 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.
