Presented by: Joy Aldrich, HNF GRIN Patient Registry Coordinator
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
Charcot-Marie-Tooth Frequently Asked Questions: Learn more about the most commonly inherited peripheral neuropathy affecting approximately 1 in 2500 adults.
There are a number of adaptive aids that can help make everyday tasks easier. This section lists just a few of them. Some of these items can be adapted from materials at home, others must be purchased.
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
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.
As a little girl, growing up with Charcot-Marie-Tooth Disease (CMT), Wendy Lowe spent a lot of time in the hospital.
Learn more from orthopedic surgeon Glenn Pfeffer, MD about surgery and CMT patients.
A recent article in More magazine featured the story of Hereditary Neuropathy Foundation president Allison Moore and her experiences living with Charcot-Marie-Tooth.
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