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Join our most recent efforts and help gear up for CMT Awareness Month, September 2011!

Just recently, the New York state legislature passed a resolution memorializing NY Governor Andrew Cuomo to declare this September as CMT Awareness month in the state of New York.

Do you know how this happened?

An amazing woman named Melinda Lang led the effort with letters, emails and calls.  Sure, she had some help along the way, because people saw what she was accomplishing, and they wanted to help.  That’s how it goes with movements.  It starts with one.  Read all about Melinda’s admirable efforts on her blog.

Let’s do this!  Wherever you are, call your state representatives and ask that they help in the process of having September declared CMT Awareness Month in your state.  And let’s go federal too!  Call your U.S. Senators and Representatives–let them know this is important to you!

Check out what happened in Oregon!

This website will list your federal and state representatives if you type in your zip code.  Call or email your representatives and ask for a declaration/acknowledgment of CMT Awareness Month.  Here’s a sample email/talking points for a phone call:

Charcot-Marie-Tooth disease is about as common as multiple sclerosis but so few have heard of it, even those in the medical community.  Lack of awareness of the most common hereditary neuropathy produces health risks (common medications can produce dangerous reactions in people with CMTand prevents critical early interventions that can mitigate the symptoms of this as yet incurable disease.  [Add personal information–I have CMT, I know someone with CMT, etc.]  Please help us achieve this crucial awaress of CMT and join the massive national awareness campaign along with the National CMT Resource Center, which is supported by the Centers for Disease Control and Prevention.  Take the steps necessary to have [your state] declare September as CMT Awareness Month.  Please contact me for further information.

Don’t wait–get started today!  September is right around the corner!

Be sure to let us know the results so we can spread the word through our website and social media outlets!  (Email Carol at HNF.)