Welcome to the Colorado Chapter!
Thank you for visiting the Colorado 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.
Colorado Walk & Roll to Cure FSHD - Fall 2021!
To contact us directly, please email: ColoradoChapter@fshsociety.org.
Don’t forget to follow us on FACEBOOK!
Past Events › All Chapters
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 »
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 »
The FSHD Society participates in the annual Rare Disease Day by encouraging our community to share their stories over social media. You can use words, photos, memes, or video to tell your FSHD story. Use whatever medium you're most comfortable with. The point is to share it over social media, tag your friends, ask them to share or re-post it to spread the word as widely as possible. Visit our Rare Disease Day toolkit for ideas, images to use, and…Find out more »