Jillian’s Cure SUPERHERO 5KSaturday, April 18, 2015
at 7:00am
111 Maiden Lane
Lexington, SC 29072
Jillian will lose her vision and hearing without a cure–put on your SUPER HERO costumes as we Save Children with Autosomal Dominant Optic Atrophy!
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.
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.
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.
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
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).
The Hereditary Neuropathy Foundation (HNF) has been chosen as the Charity Partner for the MetroTex Charitable Trust Run for Fun.
HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour
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.
Arrangements are being made to allow HNF to invite families impacted by Charcot-Marie-Tooth for a weekend, in 2013, to Camp Twin Lakes.
I registered through groupon under my mother’s credentials. How do I ensure that I, Travis Cooper, will be the participant? I have the receipt, but it is under her name. She will not be participating.
Thanks,
Travis Cooper
Hi Travis,
When you register with Groupon didn’t they give you a link to register on our webpage with your Groupon Code? Please feel free to email if need be. Co******@******re.org