On Tuesday, September 17th 2013, the world changed for the better – just a little bit. It was the day that Bernadette, the first full-length documentary on Charcot Marie Tooth disease, was released. Not only that, but it kicked of with a very special premiere at the ArcLight Cinemas Theatre in Hollywood.
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Caramel Corn Chocolate Chip Cookies
“Sometimes me think ‘what is a friend?’ and then me think… friend is what last chocolate cookie is for.” You know the voice – it’s Cookie Monster, one of my favorite Sesame Street characters. “Me want cookie! Me eat cookie!
Hot Off the Press
Research on CMT is global, and covers both laboratory and clinical studies. It is therefore critically important to realize we should be aware of what is happening elsewhere as well as in the USA because it can have implications for what we do and fund.
Hot off the press
Some recent papers on Charcot-Marie-Tooth (CMT) disease go to show that we are steadily and impressively peeling back the complexity of the biology even though it is a relatively common rare disease with several thousand publications on it.
Arclight Presents…BERNADETTE (NYR) September 17, 2013
Cast: Bernadette Scarduzio
Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide.
September is CMT Awareness Month – Help HNF Spread the Word
At HNF we have dedicated our lives to raising awareness about CMT, so we’d like to spend the month sharing what we’ve learned
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
Joseph Torello: HNF Supporter and lives daily with CMT
Joe is an active member of Team CMT and we appreciate all he does for HNF. He has been busy performing, raising awareness and exercising for a cure! While Joe was performing The Music Man at Philadelphia’s Walnut St. Theatre
Join Us for a Private Screening of Bernadette: January 29th in New York City
On Wednesday, January 29th, jewelry designer jaKe & anna will be sponsoring the NYC premiere of BERNADETTE at the old time soho Angelika Film Center in Manhattan. 50% of sales from this viewing will go to the Hereditary Neuropathy Foundation (HNF).
HNF Charity Partner for the MetroTex Charitable Trust Run For Fun Irving, Texas: Saturday May 3, 2014
The Hereditary Neuropathy Foundation (HNF) has been chosen as the Charity Partner for the MetroTex Charitable Trust Run for Fun.
HNF Charity Partner: TD Five Boro Bike Tour May 4, 2014
HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour
Personal Profile: Estela Lugo, Designing Décor
As a little girl, Estela Lugo now 32, always knew she would do “something with art” when she grew up. “I was drawing, always drawing,” she remembers.
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