Arizona Chapter
Thank you for visiting the Arizona Chapter of the FSHD Society which officially launched in August 2018. 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.
Arizona Walk & Roll to Cure FSHD - Fall 2021
To contact us directly, please email: ArizonaChapter@fshdsociety.org.
Don’t forget to follow our chapter on our local, chapter FACEBOOK page!
Please join us! Simply fill out the form in the sidebar to become a member of the Arizona chapter.
Upcoming Events
Feb
28
Rare Disease Day
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 »Mar
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. At last month's meeting, we had a…
Find out more »FSHD Society Radio with Carlos Romero
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this evening is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a "podcast about comedy and courage." We can't wait to catch up with him! Join host Tim Hollenback on…
Find out more »
ALLY ROETS
Chapter Director
Ally, her son Sam, and husband Tim live in Vail, AZ with their two cats, Robinson and Joel, and dog, Cami. Sam attends Vail Academy and High School where he is a member of the robotics club and studies Music Production through the Career Technical Education (CTE) program. Ally is retired from the United States Air Force and a substitute teacher.
Sam was diagnosed with FSHD when he was six years old, a first in their family. Since the diagnosis, they have learned as much as possible about the disease and have been avid supporters of their local MDA. They are excited to become more involved in the FSH community, help connect FSH-affected Arizonians, forward research, and improve the quality of life for those impacted through education, action, and empowerment. They believe the FSHD Society will help to unlock a treatment and cure. Until then, they are committed to increasing awareness, supporting each other within the FSH community, and exploring opportunities to help FSH-affected individuals lead full and prosperous lives.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
