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.
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
Jan
26
Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Feb
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. Our January meeting was fantastic! Attendance is…
Find out more »FSHD Society Radio on the Sharegiver Hour
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Sue Drescher Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. This month's episode features Sue Drescher, co-director of the Society's Bay Area chapter and co-moderator of the monthly Sharegiver Hour, a virtual support group for family members who are providing care for a person with FSHD. Sue will share her story and why she decided to start the Sharegiver Hour.…
Find out 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.
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