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!

Our Tacos & Tunes Celebration on November 5, 2022 was a huge success!

On Saturday, November 5th, over 100 people met at The Frontyard Brewery and 5 Soul Wine Co to celebrate Tacos & Tunes! Josh Bergmann, fellow FSHer and musician entertained the crowd as they enjoyed breakfast tacos and morning libations! Tacos & Tunes raised over $71,000 toward finding a cure for FSHD. A great time was had by all!

 

CenTex Summer Hot Sheet

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Read our CenTex Summer Hot Sheet with great information about World FSHD Day, the Walk & Roll and more!

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

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FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles... Read More »

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Rachel Sartin

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.

Ashley Bryan, Central Texas fundraising leader

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 strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.

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