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

Double Your Donation

by | Mar 9, 2015 | , | 0 Comments

Corporate matching gift programs are charitable giving programs setup by corporations in which the company matches donations made by employees to eligible nonprofit organizations. For example, if a donor works for Bank of America and donates $100 to the Hereditary Neuropathy Foundation, Bank of America will double the donation by also writing a check for $100.

Taking Matters Into Your Own Hands

by | Mar 9, 2015 | | 0 Comments

Do you have a rare form of CMT?

We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:

Now GRIN is Accessible in 141 Different Languages!

Now GRIN is Accessible in 141 Different Languages!

by | Mar 9, 2015 | | 4 Comments

The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate. Why did we choose Google? Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.

Accelerating Patient Access to Investigational Drugs in 2015

Accelerating Patient Access to Investigational Drugs in 2015

by | Mar 9, 2015 | | 0 Comments

Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.

Do You Have Charcot-Marie-Tooth Type 4 (CMT4)? – We Need Your Help

by | Mar 9, 2015 | , | 59 Comments

Autosomal recessive demyelinating CMT4 patients present with earlyonset and slowly progressing symptoms. These include progressive distally accentuated weakness and atrophy of muscles in the lower limbs. In addition, patients may have weakness and atrophy of hands, sensory loss and pes cavus (high-arched feet), and walking difficulties. Further information on CMT4 can be found at Orphanet.

Hot Off the Press – Potential Treatment for CMT1A

by | Mar 9, 2015 | , , | 53 Comments

Two recent publications from Pharnext describe a novel synergistic combination of 3 drugs (baclofen, naltrexone and sorbitol) and its effect on CMT1A both in the lab and in a phase II clinical trial. These 3 drugs already approved but for unrelated conditions, are combined at new optimal lower doses and under a new formulation. This novel potential therapeutic is called PXT-3003.

Support CMT Therapeutic Alliance

by | Mar 9, 2015 | , | 0 Comments

HNF has entered into a joint venture – the CMT Therapeutic Alliance – with a unique non profit organization (BioPontis Alliance for Rare Diseases) that brings professional drug discovery capabilities to translate our research results into potential treatments.

Scientific Advisory Board Meeting

Scientific Advisory Board Meeting

by | Mar 9, 2015 | , | 0 Comments

On the 7th of November we convened our scientific advisory board meeting at the HNF offices in NY. We have written a detailed review that has been published and captures all of the discussion and make this freely available to the scientific community.

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4 Comments

  1. Jehovah'sblessedone
    Jehovah'sblessedone on September 9, 2016 at 2:28 pm

    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
      courtney on November 17, 2016 at 9:42 am

      Where do you live?

      Reply
  2. laura belenker
    laura belenker on January 5, 2016 at 11:29 am

    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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