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.
The Hereditary Neuropathy Foundation is continuing their popular Text2Give campaign this year with the theme “Show Your Hands.”
HNF has featured a “CMT Weekly Warrior” for the past few months on our social media platforms. This has consisted of a photo and summary to celebrate the brave individuals living with CMT.
Visit one of these locations on the designated day and present the flyer to your server and HNF will receive 20% off the sales that will fund CMT research.
HNF has partnered with Inspire to provide a safe online health and wellness community in which patients, families, friends, and caregivers connect with one another for support and information.
We are excited to announce our new collaboration with Rare Disease Report (RDR) to increase awareness of Charcot-Marie-Tooth (CMT) among the medical community. RDR’s website, e-newsletter, and print publication offers an independent voice for the Rare Disease Community.
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
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