The Foundation for Casey's Cure mission is multifaceted: -To be an advocacy platform for patients with rare forms of Muscular Dystrophy -Create a registry for HMERF patients and other rare forms of Muscular Dystrophy in order to compile a database of affected patients to support any possible research/clinical trial information. -Promote research on rare subtypes in the US and global research circles to be shared widely and collaboratively among and across all scientific communities.
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!
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