Presidential Proclamation for CMT Awareness Month; We Need Your Help!

This is one of the greatest privileges we have as U.S. citizens.
We can reach out to our congressperson and ask them to co-sign the
Dear Colleague Letter.
Call To Action

Just take 10 minutes and follow these easy steps.

6 Easy Steps to contacting your Congressperson in under 10 minutes!

1.Click on this link:

  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. Evenings are best before 8 p.m. for calling.

When you have completed your call, on the page on your screen follow these steps:

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 Representatives name to go to directly to his/her website.

5.  Hit Contact or Write Us….whatever appears on that website. 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 form with your name, address, phone number 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 copy and paste the following letter ( highlighted in blue” 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!

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 & 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 common 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 by having September declared National Charcot-Marie-Tooth Awareness Month by the President of the United States.
Thank You to Julie Collins CMTA Support Group Facilitator
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This entry was posted in Charcot-Marie-Tooth disease, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, Presidential Proclamation and tagged , , , , , , . Bookmark the permalink.

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