Arizona Chapter
Thank you for visiting the Arizona 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 local community and help improve the quality of life of all those affected.
2021 Arizona Walk & Roll a Tremendous Success!
On Saturday, September 18, walkers and rollers stepped out to say "FSHD Ends with Me!" at the annual Arizona Walk & Roll to Cure FSHD. Our local event raised over $13,000 towards the campaign total, through participants and teams from across the state.
Stay tuned as we begin the planning for our 2022 Arizona Walk & Roll to Cure FSHD!
To contact us directly, please email: ArizonaChapter@fshdsociety.org.
Don’t forget to follow our chapter on our local, chapter FACEBOOK page!
Become a member of the Arizona chapter and never miss any local news or activity. Button on the right!
Upcoming Events
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... Read More »
Women on Wellness
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women... Read More »
ALLY ROETS & SAM RAY
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 Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
