FOUNDATION FOR CASEYS CURE INC

Cause Area

  • Board Development
  • Community
  • Computers & Technology

Location

162 WELLINGTON DRLAGRANGE, GA 30241 United States

Organization Information

Mission Statement

"The organization is structured as a patient advocacy group. Your gift is used to support current drug development to treat HMERF and other Titin protein disorders. Our Scientific Advisory Board oversees the medical research by doctors and researchers who are studying her very rare subtype. For these reasons, the Foundation's mission is multifaceted: --To be an advocacy platform for patients with rare diseases, like Casey's form of Muscular Dystrophy and other rare diseases. --Promote global research on her rare subtype in the Titin protein, where Casey's genetic error lies with anticipated application to other titin related diseases/disorders, and to use our research to promote further research on the Titin protein. "

Description

How did the foundation come about? When Casey's diagnosis was made a few years ago, we started looking for advocacy groups for her subtype, HMERF. When we found that none existed, we made it our business to start one to raise the public's awareness about muscular dystrophy, its progression, and its effect on afflicted patients and families.

To find out more, please visit our website and social media pages. We look forward to you being inspired to help us!

Reviews

Would you recommend FOUNDATION FOR CASEYS CURE INC?
1 review Write a review
by Christine D. (December 18, 2021)
Supporting The Ride for Casey’s Cure gave me an opportunity to interact with Casey’s immediate support team - her friends and family. I was also able to learn more about H-MERF and other types of Muscular Dystrophy and how science and legislation are providing support for those affected.

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