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

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Please join us! Simply fill out the form in the sidebar to become a member of the Michigan chapter

Upcoming Events

Today

Event Series 2025 Chapter Meetings

Michigan Chapter Meeting

Zoom Virtual Meeting , United States

Michigan Chapter Meeting DATE/TIME: Monday, April 28th, 2024 - 7:00PM ET Virtually by Zoom. Please RSVP to receive the link. Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-04-09/433mcc

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Two blonde women standing next to each other looking at the camera. One wears a red and black flannel shirt, the other wears a black sweater. Both wear blue jeans.

Dre Vanbeek & Alissa Lowman

Chapter Directors

Andrea (Dre) Vanbeek (right) and her sister, Alissa Lowman (left), are the Co-Chapter Directors for the Michigan chapter. In September 2021, Dre’s son, Crew, was diagnosed with FSHD Type I at the age of 12. This diagnosis led Dre and Alissa to dive into research and find ways to support Crew and others facing the same challenges. Their goal is to connect families with resources, information, and a community of support, offering hope in a time of uncertainty.
Dre lives in West Michigan, where she works as a registered nurse and is a proud mom of four children, including Crew. Alissa lives in the Detroit area, where she recently retired from teaching and has three children. Both Dre and Alissa are passionate about helping families navigate the journey of FSHD and raising awareness in their community.

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.

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