Welcome to the Central Texas Chapter!
Thank you for visiting the Central Texas Chapter of the FSHD Society which officially launched in March 2020. 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.
The goals of the Chapter Program here in the Central Texas area are to:
- Increase awareness and educate families throughout Central Texas.
- Help build connections among patients, care givers, health care providers and others affected by this disease.
- Harness the power of those shared connections allowing us all to gain strength, support and encouragement as we push forward in finding a cure for FSH.
- Last but not least let’s HAVE SOME FUN while we accomplish these goals!
2024 Central Texas Walk & Roll to Cure FSHD
Saturday, October 5, 2024
Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and via email, and invite others to join you in getting us closer to a cure!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
Texas Community Social Hour
Wednesday, June 5, 2024
Join us for a special Texas Social Hour and come catch-up with old friends or make some new. It's been a little over a month since we gathered as a community together for the Texas FSHD 360, but we already have folks who want to continue building on the connections they made. Many attendees were disappointed they weren't able to exchange contact info during the excitement of the day, which is why we'd like to host this social hour as an opportunity to get together again. Whether you were able to attend or not, we'd like to open this social hour to the entire Texas community so that we can have casual conversation, offer each support, and share a few stories as a group.
If you are unable to attend this social hour, but would like to share your contact information with the group, please fill out this form >>
If you are able to attend, please use the below button to RSVP for the event.
Special All Texas Chapter Meeting on ADA Accessibility in Public Spaces
Thank you to everyone who attended our April 24th Chapter Meeting where we were joined by ADA Specialist, Attorney Brandon A. Rotbart, P.A.
During the meeting, Mr. Rotbart discussed ADA Compliance in public spaces, and provided examples of what to look out for as members of the community. Please click here to watch the recording or here for general notes.
Join us for a Virtual Happy Hour on March 17
DATE: Sunday, March 17, 2024
TIME: 6:00 pm - 7:00 pm CT
WHERE: Virtually via Zoom
DETAILS: Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where we'll get a special sneak peak of what's going to be discussed at the FSHD 360 in Round Rock, connect with others across Texas, and get excited for 2024, all while enjoying your favorite drink. This is open to all friends across Texas.
The 2023 Central Texas Walk & Roll to Cure FSHD!!
Our 2023 annual Central Texas Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
Volunteer Spotlight: Ashley Bryan
Meet your local fundraising leader, Ashley Bryan! She shares her journey with FSHD, how her connection to the FSHD Society has helped her, and why she's hopeful for the future.
To contact us directly, please email: CenTexChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Upcoming Events
- There were no results found.
- There were no results found.
Rachel Sartin
Chapter Director
Rachel lives in Austin Texas with her husband Rob. They have two sons, one in high school and one in college. After studying computer science in college and graduate school, Rachel worked in a variety of software companies. She did many things, but mostly concentrated around the development of software, both as a developer as well as manager and executive. She recently retired and is concentrating on family and other volunteer efforts. So she is excited to be able to work with the FSHD Society as a new chapter director. She hopes the chapter can offer support and information to those affected as well as their friends and family. Rachel was diagnosed with FSHD shortly after high school.
Also please meet the Central Texas Fundraising Leader, Ashley Bryan. Contact her to brainstorm ideas and to volunteer for fundraising efforts! She can be reached at ashleybryan1@gmail.com
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 a better life, 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.
