Help gear up for CMT Awareness Month, September 2011!

The New York state legislature recently passed a resolution calling on Governor Andrew Cuomo to declare September CMT Awareness Month in New York. That victory started with one person: Melinda Lang, who led the effort through letters, emails, and phone calls. Others joined as momentum built. Read about Melinda’s efforts on her blog.

Similar progress has been made in Oregon. Now it’s time to push for recognition in every state, and at the federal level.

How to Advocate

Contact your state representatives and ask them to declare September CMT Awareness Month in your state. Then contact your U.S. Senators and Representatives as well. Use the website below to find your representatives by entering your zip code.

Here is a sample message you can adapt for a call or email:

Charcot-Marie-Tooth disease is about as common as multiple sclerosis, yet very few people, even in the medical community, have heard of it. Lack of awareness creates real health risks: certain common medications can trigger dangerous reactions in people with CMT, and delayed diagnosis prevents early interventions that can meaningfully reduce symptoms. This disease has no cure yet. [Add your personal connection: I have CMT, or I know someone who does.] Please help us raise awareness of CMT and join the national campaign alongside the National CMT Resource Center, which is supported by the Centers for Disease Control and Prevention. Please take the steps needed to have [your state] declare September as CMT Awareness Month, and contact me with any questions.

Don’t wait. September is coming quickly. When you have news to share, let HNF know through the contact form on this website so we can spread the word.