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 is proud to present “CMT Presents,” a virtual presentation series designed to spread awareness in the communities, companies, and groups closest to you!
Charcot-Marie-Tooth disease is one of several hereditary neuropathies that affect the peripheral nervous system. CMT affects about 1 in every 2,500 people, making it one of the most common inherited neurological disorders worldwide.
Following the recent interview of country music star, Alan Jackson, with Jenna Bush Hagar on the TODAY Show where he revealed that he has balance issues related to his CMT, Prevention magazine contacted HNF for more information about CMT. HNF Founder, Allison Moore was quoted in the article:
New Study Measures Progression of CMT1A Nerve Impairment
HNF would like to invite all dog owners (and non dog-owners) and their furry besties to take a bite out of CMT this September.
CMT has been an unexposed disease for many decades, but HNF’s mission is to change that. For over 9 years, HNF has been connecting to Neurologists at important meetings.
Global Genes, in partnership with the University of Pennsylvania School of Medicine Orphan Disease Center, will host the 2018 RARE Patient Advocacy Symposium in Philadelphia on May 19th, 2018.
Start the New Year by getting involved and helping HNF conquer CMT. There are many ways you can get involved.
Meet Lainie Ishbia who created Trend-ABLE to empower women with invisible physical disabilities and challenges.
a new partnership with The Mighty
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