Member Stories

We welcome and encourage all of those who have a story to tell to please share it here on the pages of our foundation website. It isn’t for any of us to say which story, line or word will be the one that will connect with a reader in such a way that will educate, inspire or bring comfort. By sharing these stories, we will have done our best to help those that come after us and perhaps help those in the medical community who will study us and search for a cure.

Please do not write your history in the comments section below. We prefer that you send it to  and it can then be properly posted to a page. Thank you.