Addie has a rare disease called Charcot Marie Tooth.
She rewrote Try by Pink into a song about her disease and recorded it to raise awareness.
Her nonprofit Addie’s All Stars raises money to help fund research for a cure.
Addie has a rare disease called Charcot Marie Tooth.
She rewrote Try by Pink into a song about her disease and recorded it to raise awareness.
Her nonprofit Addie’s All Stars raises money to help fund research for a cure.
HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care and treatment of hereditary neuropathies.
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth
The women: Lenka Vodicka of California, Michele Kekac of Connecticut, Esther Lejbovitz of New York and Nicole Burggraaf of Cananda, post to the site whenever they feel they have something to share.
NBC10 in Philadelphia featured a story on Bernadette Scarduzio, one of HNF’s most prominent partners who is the subject of an upcoming documentary, Bernadette.
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