September is Charcot-Marie-Tooth (CMT) Awareness Month - Scheduled events, activities and important partnerships announced throughout the month!
NEW YORK, Sept. 19, 2014 /PRNewswire-USNewswire/ -- An entire month is dedicated to one of the most common forms of inherited neuropathies – Charcot-Marie-Tooth disease (CMT) – a debilitating neuromuscular disease affecting the arms, hands, feet and legs, causing extreme muscle atrophy, weakness, and foot and hand deformities. CMT affects 1 in 2,500 in the US and millions worldwide. CMT is a progressive disease, and over time patients lose the normal use of their legs, requiring mobility devices such as leg braces, wheelchairs and scooters to get around. In the most extreme cases, the hands become severely impaired, and patients experience vocal cord and breathing problems. To date there is no cure.
Fortunately there is a non-profit organization, the Hereditary Neuropathy Foundation (HNF), working to change that. HNF is leading the charge in finding treatments and cures for CMT.
HNF, together with a group of committed patients, caregivers, friends, philanthropists and businesses, are hosting events, broadcasting video Public Services Announcements, and introducing corporate partnership events and activities to increase awareness and raise funds for CMT research that will lead to treatments and cures.
- Celebrity interviewer Arthur Kade launched this powerful video in honor of CMT Awareness Month, highlighting the difficulties of living with CMT.
- Throughout September, California Pizza Kitchen is partnering with HNF to raise awareness and funds through their charity-giving program.
- Crank Cycling Studio is hosting a Spin-for-a-Cure on Saturday, September 27th from 1-3pm on the Upper East Side of Manhattan. A brunch will immediately follow at Parlor Steakhouse to support CMT research.
- HNF has also recently announced support from Pharnext, a French biopharmaceutical company discovering and developing new therapeutics for orphan and common neurological diseases including CMT. Pharnext supports HNF's initiatives to raise the awareness around CMT and the expansion of the Global Registry for Inherited Neuropathies (GRIN).
About Hereditary Neuropathy Foundation
HNF, a non-profit 501(c) 3 organization whose mission is to increase awareness and accurate diagnosis of CMT and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures. HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government and industry, to develop treatments for CMT. Currently TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum.
Media Contact
Allison Moore, CEO
HNF
212-722-8396
[email protected]
Video - https://www.youtube.com/watch?v=oKmDeIGE4gI
SOURCE Hereditary Neuropathy Foundation
WANT YOUR COMPANY'S NEWS FEATURED ON PRNEWSWIRE.COM?
Newsrooms &
Influencers
Digital Media
Outlets
Journalists
Opted In
Share this article