HNF is excited to hold the 2nd Annual Patient-Centered Summit with a focus this year on CMT/HNPP and Pain in Cambridge, MA! The Summit will be held on the campus of the Massachusetts Institute of Technology (MIT) in the Samberg Conference Center.
Registration opening soon. Click here for information more information.
Dust off those spin shoes and come out to CRANK NYC (Upper East Side – 1658 Third Avenue) Saturday, September 27, 2014 from 1pm to 3pm and Spin-For-A- Cure!
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
Lori Sames and her husband Matt formed Hannah’s Hope Fund (HHF) following their youngest daughter’s diagnosis of Giant Axonal Neuropathy (GAN) in 2008. GAN is the most rare, and one of the most severe, forms of Inherited Neuropathy.
Does anyone know the difference between CMT and HNPP. I have read that they come under the same umberella. I have HNPP and so do two of my sisters. We have a wide range of symptoms, with various disabilities. I need a walking stick to move about and most days I can’t walk more than a few metres. My elder sister, who was first diagnosed with HNPP, 20+ years ago, can walk around and goes on holiday two ot three times a year. I would be interested to find out about the difference and similarities in the two diseases.
Thank you.
Carol.