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The Colorado/New Mexico chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Kurt was diagnosed with FSHD at the age of 53 after experiencing muscle weakness and atrophy that led to a search for answers. As someone who had lived an active lifestyle as an endurance athlete, the progression of the disease deeply affected all aspects of his physical activities.
Now unable to work, Kurt is focused on partnering with the FSHD Society to provide education, share insights, and offer support to FSHD patients and caregivers. His goal is to help others live the best life possible despite the challenges of FSHD.
Contact Kurt directly or visit the Colorado/New Mexico Facebook page.
While Kurt is powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
