Hereditary Neuropathy Foundation Declares September Charcot-Marie-Tooth Awareness Month
"THE BIGGEST DISEASE MOST PEOPLE HAVE NEVER HEARD OF"
NEW YORK, Sept. 4, 2019 /PRNewswire/ -- The Hereditary Neuropathy Foundation (HNF) declares September as Charcot-Marie-Tooth (CMT) Awareness Month. CMT, the most common inherited peripheral neuropathy, affects 1 in 2,500 people…approximately 2.6 million people worldwide… and can strike at any age. Despite this, most people, even many doctors and CMT sufferers themselves, have never heard of it.
CMT is a disease that causes progressive nerve damage: early signs can include high arched feet, curled toes, and claw-like hands. Many of these signs begin subtly and may go undiagnosed for years, leading to legs and arms becoming deformed and difficult to use. For young children, the earliest signs may be clumsiness, lack of reflexes, and frequent falls, which can lead to bullying, shaming, and injuries, especially when undiagnosed children are pushed into PE and other activities that are not adapted to their special needs.
To donate to the cause, click here https://www.hnf-cure.org/donate-hnf/
Over time, those with CMT often lose the ability to walk and may become dependent upon assistive devices to remain mobile. Severe, chronic pain is common. Scientists have discovered over 100 related genes but there are currently no cures and only palliative treatments.
Declaring September as CMT Awareness Month puts more attention on CMT and is a special time for people to be part of of HNF's ongoing efforts to inform the public, medical community, educators, and legislators about this not-so-rare and often misdiagnosed disease.
How can CMT Awareness Month make a difference?
"Together, we can raise awareness, funds for research and support the community by joining HNF's activities and participating in events across the country" said, Allison Moore, HNF founder and CEO.
How can you help?:
- Participate in one of HNFs Team CMT Spin events by riding with us or donating
- Host a community event in your local community
- Join HNF's patient registry to receive regular updates on research and clinical trials that you may be eligible for
- Become part of the Movement is Medicine™ program
- Donate to the Therapeutic Research In Accelerated Discovery Program
- Join Team CMT
- Add this twibbon to your social media pages.
HNF excited to announce two awesome CMT Awareness Spin events this month!
As part of their "Movement is Medicine™" program, HNF has held countless spins, runs and rides to help raise funds and awareness for CMT research. Founder Allison Moore had a vision years ago that exercise would be a wonderful way to spread awareness across the nation and raise funds. On September 21st, HNF, in conjunction with Revolution Fitness of Santa Monica, will be HNF's first such event on the west coast; interested participants can sign up here.
"This event is close to my heart because my mother, brother and I all have CMT. It's important that we raise awareness about the disease and that we find a cure, for the sake of my family and my future family. Also, I started spinning when my legs could no longer handle running. Being on the spin bike made me feel like an athlete again. I could go fast, not worry about falling and most importantly I was never left behind or "too slow" to do it. I think spinning is a great way to keep CMT patients moving and strong!" - Tara Emerson, CMT Patient and Santa Monica Spin Instructor @Revolution Fitness
In addition, HNF is co-hosting a Team CMT Spin Boston on September 28th with Boston University fraternity Pi Kappa Epsilon. We are excited that these fine men are making a difference in the lives of all with CMT and look forward to coming together as one and hosting a successful event .
"We are extremely excited to be working together with the Hereditary Neuropathy Foundation on the Team CMT Spin to help raise money for CMT research and programs." - Connor Cox, President of Pike at BU
These important contributions, big or small, will greatly help toward funding CMT research in 2019 and beyond. Together, we can cure CMT!
About Hereditary Neuropathy Foundation (HNF)
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.
Contact: Allison Moore
T: 1-855-HELPCMT (435-7268)
E: [email protected]
SOURCE Hereditary Neuropathy Foundation
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