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 CMT) and 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.)
About 28 years ago my cousin started loosing feeling in her feet, as time went by the pain and numbness got worse. She went to a plethora of Doctors, indured many tests, some very painful, trying to find out what was wrong. An unbelievable amount of possibilities were brought up, including alcoholism, that one was way off target. When she tired of the guess work, she checked in at the Mayo Clinic, was there a week, went through extensive poking and proding and came back not much more the wiser, except she was told she had “Periphereral Neuropathy”and that was that, sorry about your luck! They knew nothing about the cause, cure, or remedy for it, they hit a dead end. In time it was in her legs and advanced to her fingers and then her hands, she couldn’t drive anymore and had to quit work and go on diability..she advanced to a wheel chair just before she died at 58 in 1999…..My sister has the same thing………and so do I. We both figured there was not much hope for us either, since the medical was so out of touch with this disorder. We have both studied what little there is out there about it and have come to find out we have Charcot-Marie-Tooth (C.M.T.) Disease. CMT is about as common as multiple sclerosis but not many have heared of it, even in the medical field. The Lack of awareness of this most common hereditary neuropathy can produce health risks, because common medications can produce dangerous reactions in people with CMT, as it did with my cousin. It also prevents critical early interventions that can mitigate the symptoms of this yet incurable disease. Please help us achieve this crucial awaress of CMT and join the 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 Oregon derclare September as CMT Awareness Month. Please contact me for further information.