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
Research on CMT is global, and covers both laboratory and clinical studies. It is critically important to be aware of what is happening elsewhere as well as in the USA because it can have implications for what we do and fund at the HNF.
Grab your shoes and spin CRANK Style NYC!
When: Saturday, September 27, 2014
Where: 1658 3rd Avenue New York, NY 10128 (between 92nd & 93rd Street Upper East Side)
Time: 1:00 – 3:00 pm
This year our Chief Science Officer, Sean Ekins, will attend the event and provide an update on the exciting research HNF has funded, thanks to the generosity of Grace’s Courage Crusade!
Join us November 7, 2014 at A Hollywood Affair to raise money and awareness to fund research for Autosomal Dominant Optic Atropy (ADOA).
Jillian is battling this disease, which involves vision loss, hearing loss, disturbances in the nerves used for muscle movement and sensation, and muscle weakness.
Dress like your favorite celebrity to have your moment on the Red Carpet!
Hereditary Neuropathy is participating in the Americana Manhasset’s Champions for Charity®. From Thursday, December 4 through Saturday, December 6, over 70 participating Americana Manhasset and Wheatley Plaza stores will donate 25% of designated pre-tax purchases.
It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.
If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.
Arlene On the Scene was recently named “Staff Pick” by Teaching Tolerance, an amazing organization dedicated to reducing prejudice, improving intergroup relations and supporting equitable school experiences for our nation’s children.
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