Our CMT Inspire Community, Soon to be 2,000 Strong!

by | Jun 4, 2015 | 1 comment

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. Some of the HOT topics currently being discussed include “Pregnancy and CMT,” “Types of AFOs/Leg Braces,” and, “What You Wish Your Doctor Knew.”

If you have not joined us yet, please take a minute to set up your profile and join our community. Don’t forget to add your picture to make things a bit more personal. For more info on the CMT Inspire Community, please contact [email protected]

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September is CMT Awareness Month

CMT awareness month is an entire month dedicated to building awareness, raising funds and finding a cure. The Hereditary Neuropathy Foundation (HNF) has committed to spend 30 days in September hosting local and national events, launching fundraisers, and spreading the word about the effects of Charcot-Marie-Tooth disease

Allison Moore is going to be published!

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.

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1 Comment

  1. chiefarchitect

    I am a 74 year old asian male that has had CMT approximately 8 years now. I was wondering if any other Asians have had similar experiences in the progression of the muscular weakness as well as blurred vision, hearing loss and speech problems. I think this website is a wonderful resource for those who suffer from the desease. Thank you.

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