FSHD Society Colorado

Announcing the 2026 T-Shirt Design Contest

We're looking to you for inspiration! Your design could become the 2026 Walk & Roll to Cure FSHD t-shirt, a World FSHD Day t-shirt, or merch anyone with FSHD can wear proudly. Designs must be submitted as a PDF file via our form by 11:59pm ET on Feb. 28, 2026.

Submit your ideas: https://www.fshdsociety.org/2026-tshirt-contest/

Calling all 2025 Colorado Walk & Roll to Cure FSHD Team Captains - it's time to set up your team! Register as a team captain by June 20th to receive an exclusive FSHD Society ball cap as our thank you!

We would also like to thank Let's Roam for their generous donation of scavenger hunt tickets to support this year's Walk & Roll! Learn more at https://www.letsroam.com/donations

Join the fun and prizes at the 2024 Colorado Walk & Roll to Cure FSHD!

Win an autographed photo of Nathan MacKinnon! Join us at the Colorado Walk & Roll to Cure FSHD on Sunday, September 8th at Philip S. Miller Park Amphitheater - Castle Rock, CO
JOIN HERE >> https://give.fshdsociety.org/event/2024-colorado-walk-and-roll-to-cure-fshd/e570036

This year, we have some great giveaways!
All registered attendees will be entered in our raffle drawing*, and have a chance to win (among other great prizes) an authenticated signed photograph of Colorado Avalanche star, and 2024 NHL Hart Trophy & Ted Lindsay Award recipient, Nathan MacKinnon!

See you on September 8th!

*must be present to win.

Join us as we gather to toast like minded people and enjoy spring in Colorado. This is not an official FSHD gathering and will have no agenda, but we can take the opportunity to socialize and enjoy each others company.

Postino - 1497 Park Central Dr, Highlands Ranch, CO 80129
Tuesday, April 30th 3:00

No need to RSVP, simply show up and enjoy!

Announcing the March 2024 Colorado FSHD Chapter Meeting.

We'll be meeting on Saturday, March 23rd, 2024 from 3:00-5:30 at Landsdowne Arms in the Library Room.

Join us for a special guest speaker - Caitlin Prechel from Rise Prosthetics who will be discussing AFO solutions to combat drop foot and keeping our mobility options open.

Hello Colorado FSHD Friends!

As you may know, the FSHD Society’s biennial FSHD Patient Connect Conference is happening this June 15-16 in DENVER!!
https://go.fshdsociety.org/e/701273/24-patient-connect-conference-/44m9fs/1135343648/h/neUhc3dQ6K7eMPZBoc5A1uXBaH1GZj8qqlntsgqMx1c

We are so excited to be able to host this great event in our own backyard.

Registration information will be coming out in the coming weeks, so watch your in-box.

That being said, the planning committee is busy putting together the weekend agenda for the conference.

We are interested in getting speakers that are local to the Denver-area that have expertise in helping FSHD patients in the following areas:

Mindfulness meditation
Qigong, Yoga, Stretching, Exercise
Diet / nutrition
CBD and medical ma*****na expertise
We have open slots for both plenary speakers (15-20 minute presentation) and breakout session facilitators (one hour).

We prefer the speaker to donate their time, but we would cover their meals at the event.

If you know of someone who would make an excellent speaker at our event, please let me know so I can reach out to them as soon as possible!

We can’t wait to see you this June! Again, stay-tuned for registration information coming your way soon.

2024 Patient Connect Conference | FSHD Society CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. FSHD Connect patient conference, a... Read More »

Colorado Chapter Meeting notes for those who could not join us -
CO Chapter Meeting 10/22/2023

Fundraiser Update – Beth Johnston
- Record year for the Walk & Roll both locally and Internationally
- 25 separate events both in the US and Canada with over $1,000,000 raised with 1700 participants!
- Colorado raised over $82,000 with 297 participants

- Michael Ahlers who used his participation in the Triple Bypass bike ride to support his sister who has FSHD raised over $6,000 for the society.

Clinical Trial update – Brianna Blume from UCHealth
- Fulcrum: Trial is full and no longer recruiting participants.
- Roche/Manoeuvre – Currently recruiting
- Avidity – Currently recruiting
- MOVE/MOVE+ - Currently recruiting
- Reachable Workspace – Recruiting soon

Pain Mitigation Strategies
- Initial document release and accepting any updates and/or feedback

Colorado FSHD Resource List
- Initial document release and accepting any updates and/or feedback

Hey Colorado FSHers!
On July 22nd, Michael Ahlers will be riding in the grueling 110-mile Triple ByPass bike ride. He has set a goal to raise $10,000 for the FSHD Society by dedicating this epic bike ride to his sister who is an FSHD patient. The ride goes over three major mountain passes essentially traversing the Rocky Mountains.
Support his ride here: https://raceroster.com/events/2023/62364/the-triple-bypass-2023/pledge/participant/17459024
Or, better yet, meet him at the Avon Performance Pavilion at Nottingham Park at the finish line!.
Go, Michael, and THANK YOU!!

Help Michael raise money for participating in THE TRIPLE BYPASS 2023 on July 22, 2023 This year, I'm dedicating my ride in the 2023 Triple Bypass to my sister, Michele, who lives with facioscapulohumeral muscular dystrophy (FSHD). Once an exceptionally avid runner, this condition makes even walking difficult for Michele. Together, we're working to raise funds for the FSHD Society. Yo...