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

Breaking News: First Therapeutic Gene Therapy to Treat an Inherited Neuropathy is Approved for Clinical Trial!

The first disease community to receive a therapeutic gene to the spinal cord for an ultra rare inherited neuropathy is Giant Axonal Neuropathy (GAN). Congratulations to Hannah’s Hope Fund (HHF), a 501(c)3 public charity, which has driven this collaborative research in less than six years. Six million dollars has been raised to date to fund pre-clinical and clinical research on this rare disease.

A Rare Disease Patient That Does It All!

A movie script could not play out like this. There are very few occasions when a rare disease patient becomes the topic of a story that is truly uplifting. Often the stories are tragic or disheartening. That was not the case, however, with CMT patient Kim Goodsell.

Hot Off the Press

One of the ways that some CMT patients first become aware of their disease is when they are given a drug treatment for another disease. This is termed chemotherapy-induced neurotoxicity. Drugs such as paclitaxel and the vinca alkaloids that are widely used in cancer treatment cause severe peripheral neuropathy and in some patients this exacerbates CMT, revealing it perhaps for the first time.

Kara Q&A: How to “support” a friend or family member that’s affected with Charcot-MarieTooth.

My name is Courtney Hollett, Fundraising Coordinator at the Hereditary Neuropathy Foundation. This time of year I count my blessing daily and wanted to share with you a Q&A session I had with a new supporter of HNF. Kara, like myself has many family members affected with CMT and I reached out to her to share her thoughts and advice about how to “support” a friend or family member that’s affected with Charcot-MarieTooth.

Collaboration is the Key to HNF Success

Collaboration is the Key to HNF Success

We at HNF are so proud of the accomplishments of those scientists we fund and are asking you to please continue to support our efforts. Our Therapeutic Research In Accelerated Discovery (TRIAD) program is a proven collaborative model in the drug discovery process.

Sneak Peak of Fall Newsletter: CMT Research Study Survey

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

Join the conversation

Leave a Comment

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

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news