Join Now
Join over 8668 active members:
 

Call to Action!

Together we can make the difference!

Help us get President Obama to proclaim September National Charcot-Marie-Tooth Awareness Month!

This truly is our "Call to Action." All we ask is that you set 15 minutes aside to contact your U.S. Representative by phone and email and tell him/her about the "Dear Colleague" letter and ask him/her to cosign it.

Just follow these 6 Easy Steps (Have questions/need Help? Contact Julie Collins at phantomsec4@yahoo.com.):

6 Easy Steps to contacting your Congressperson in under 15 minutes!

1. Go to: http://www.opencongress.org/people/representatives

2. FIND YOUR REP.  Enter your zip code and hit "SHOW ME."  The telephone number for your representative will appear on the right side of  the screen.  Please make your call now, but don't close out this screen before completing steps 3-6 to also send him/her the text at the bottom of this page.

3. Under "Representatives Representing Your Zip Code," click on the underlined name of your Representative.

4. On the next screen that comes up, on the right side, click on the Representative's name to go to directly to his/her website.

5. Hit "Contact Me," or "Contact Us," or "Write Us"...whatever appears on that website. (Usually it's across the top, sometimes it's on the left side.  It may take you a minute to find it, but it is there. A web form will open up. (You might have to click on "Email Me" or "Write Me" again to have the form appear.) You must complete the information to prove that you live in the area served by that representative.  Without this information your contact will not be read or considered.

6. After completing the form with your name, address, phone number etc. , cut and paste the text below into the Message Box and Hit "Send," "Submit"...etc.  You have completed the process for sending the email!  Thank you from our entire CMTA Community!  Together we are making a huge difference!

Text to Copy and Paste:

I am a constituent in your District. I am writing to encourage you to cosign a letter to President Obama circulated by Representatives Eliot Engel and Robert Dold in support of a Presidential Proclamation designating September as Charcot-Marie-Tooth (CMT) Awareness Month.  We believe that with your support and the attention to CMT which a Presidential Proclamation can bring, we can go a long way to finding a treatment or cure for this debilitating disease. 

CMT is the most commonly inherited peripheral neuropathy, affecting approximately 1 in 2,500 people in the United States and worldwide.  It is characterized by a slow and progressive degeneration of the muscles in the foot, lower leg, and forearm - extending to weakness in the hands and loss of muscle tone.  Charcot-Marie-Tooth Disorder impairs the simplest of normal daily functions: balance, walking, buttoning shirts, writing, turning keys. In most cases, CMT does not affect life expectancy; however, in several forms the disease is more severe - weakening children so that they require wheelchairs and even resulting in premature death.  There is no cure for CMT to date, but there is hope. 

There is no funding affiliated with this request; no earmarks, no hidden agendas, nor is it attached to any form of legislation.  There is no connection with any political party or any other organization. It is simply the bi-partisan request of your constituents, the patients, their families and caregivers to implore you to support promoting awareness of this debilitating disease.  They are eager to reach out to their fellow citizens to promote awareness of this disorder and support of those living with CMT.

Your staff may contact Jason Steinbaum with Representative Eliot Engel's office at: jason.steinbaum@mail.house.gov (extension 52464) or Eric Di Silvestro with Representative Robert Dold's office at: eric.disilvestro@mail.house.gov (extension 54835) to add your support.

Thank you for helping this very special group of Americans in having September declared National Charcot-Marie-Tooth Awareness Month by the President of the United States.

Share this post

 

CMTA Newswire