Letter from Rebecca Pennino: Executive Director of Iron Will Foundation
Hi Everyone,
I couldn't think of a better way to start this blog than discussing out first fundraising event, HNF/IronWill Spin-a-thon, and I am proud to say it was a success. We raised over $73,000 to help find a cure. We chose tp wprk closley with Hereditary Neuropathy Foundation (HNF) which was founded by a dear friend to Gary, Allison Moore. HNF has made it their mission to find a cure for CMT. Charcot-Marie-Tooth disease (CMT) is a hereditary motor-sensory neuropathy (HMSN). HMSNs are a group of progressive neurological disorders that affect the motor and sensory units of the peripheral nervous system. CMT causes weakness because the nerve signals are impaired (demyelinated) before they reach the muscle. Over time this causes atrophy in various areas of the body. Although considered a "family disease", people are commonly affected differently. To date there is no known cure or treatment to arrest levels or rates of progression.
I was witness to Gary Salmirs, not leaving his bike for the entire event, which lasted 6 hours. He actually persuaded others to do the same. In the end, over 5 people rode for 6 hours straight to raise money for Hereditary Neuropathy. The day of the event I met many children and adults who are suffering from this disease. It was amazing to see them get on a bike, and though extremely painful, spin for as long as they could. To find out more about this disease, please click on this link http://www.hnf-cure.org.
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