STAYING UP TO DATE WITH Casey's Cure for HMERF MUSCULAR DYSTROPHY!
Dear Supporters,
The goal of this page is to let you keep track of the progress we're making in our 'hunt' for the researchers of the rarest diseases and the grants that we've applied for that can fund their research on the MFM9 gene, or gene #603689, or Hereditary Myopathy with Early Respiratory Failure.
We hope you'll check back often to stay up to date on our work that couldn't be done without your donations.
Many thanks,
The Foundation for Casey's Cure, Inc.
Update!! Creating a Registry!
This update is to let you all know that The Foundation for Casey's Cure will not have to create it's own registry!
Few of us, including myself, knew the process and costs of starting our own registry. It was during the learning curve of that process that I was given information to several registries; sometimes called bio-registries.
This came as a wonderful surprise because it means that we have met the first two goals established for this non-profit: 1) Get Casey to Ohio State for a tissue donation. 2) Get a registry for HMERF/MFM9 patients to use so we have a database for clinical trials moving forward. (Yes, I am an eternal optimist and we WILL find a treatment and need clinical trial database to make it happen...)
Two goals down and two to go!
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One of the first items on our To-Do List was to create registry for patients with HMERF (Hereditary Myopathy with Early Respiratory Failure).
We've been fortunate enough to get direction from National Institute of Health on how that's actually done and our work on it has already started!
For anyone interested in the mechanisms for starting a registry, you can read more about it here!
Thanks so much!
Chris, Casey, and Team