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
May
10
Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
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FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
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Caregiver / Sharegiver Hour
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…
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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.
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