CATEGORIES: CMT Update

September is CMT Awareness Month

by | Aug 19, 2014 | 4 comments

Rita UnselfieGet involved and be a part of finding a cure!

CMT awareness month is an entire month dedicated to building awareness, raising funds and finding a cure. The Hereditary Neuropathy Foundation (HNF) has committed to spend 30 days in September hosting local and national events, launching fundraisers, and spreading the word about the effects of Charcot-Marie-Tooth disease (CMT), all in an effort to help those living with this disease.

CMT has been referred to as “the biggest disease you’ve never heard of.” HNF wants to change that, and with your help we believe that we can.  Approximately one in every 2,500 people (2.6 million worldwide) live with CMT. CMT is a progressive disorder that causes the nerve cells leading to the body’s extremities to slowly degenerate, resulting in the loss of normal use of the hands, arms, legs and feet. CMT does not discriminate – this disease strikes people of all ages, genders, races and ethnicities.  Alarmingly, symptoms are often not diagnosed properly and unfortunately are routinely overlooked by doctors and medical professionals.

This is the time to get the word out about CMT and to increase the understanding of its impact on the lives of those living with the disease.  Our goal this September is to expand our community in sharing our passion for people to understand the seriousness of CMT.

So don’t wait, get involved today!

•Text2give Un-selfie4CMT campaign
•California Pizza Kitchen Fundraiser
•Dick Sharpe Memorial Golf Event
•NYC Spin-For-A-Cure

More is planned, so follow us on Twitter (@CMT Neuropathy), Facebook (Hereditary Neuropathy Foundation),  and register with us
 to hear more about our CMT awareness programs.

Learn more on this topic

Related Blog Posts

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

In Memoriam

The HNF family has lost two great people this summer: Franklin G. Downing Sr. (father of board member Matthew Downing) and George G. Gatta (father of board member Kathleen Zappola).

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4 Comments

  1. Jehovah'sblessedone

    I was just recently diagnosed w/this after I’d been taking meds for another condition, and i started having spasms in my legs, trips and falls.

    I can’t find any support groups or doctors in my area that’s knowledgeable of what meds I can and cannot take. Where can I find help?

    Reply
    • courtney

      Where do you live?

      Reply
  2. laura belenker

    My dad has CMT and I would love to know of any studies/trials. Does anybody know of any kind of treatment? This effects his legs and feet.

    thanks anybody!

    Reply

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