Call to Action!

Friday, March 30, 2012 11:27 AM | CMTA  

Your Congress Needs To Hear From You Now! This is your official “Call to Action!”

Help get President Obama to declare September National Charcot-Marie-Tooth Awareness Month.

It’s Time! All the groundwork is laid. The “Dear Colleague” Letter is circulating on the House Floor. Letters have been sent to each and every Congressional Representative in the United States of America requesting that they cosign the official request to have President Obama declare September as National Charcot-Marie-Tooth Awareness Month!

This truly is our “Call to Action.” All I ask is that you set 15 minutes aside to contact your U.S. Representative by phone and tell him/her about the “Dear Colleague” letter and ask him/her to cosign it. It’s that simple. By visiting www.opencongress.org, clicking on “Representatives” across the top bar, and entering your zip code, you will be immediately redirected to the names and contact numbers for all of your Congressional Representatives. Make the call. Explain to the staff member that you are calling about a Health Care Initiative, (a Presidential Proclamation), and that as a constituent you believe it is of vital importance for him/her to cosign the letter. Ask to speak directly to the Congressperson if at all possible.

You may be asked questions about the initiative, and you can be prepared to answer them by remembering:

That this letter has no political agenda. It is being sponsored on a bi-partisan level.
The letter we are asking to have signed has no request for funding.
It has absolutely no legislation attached to it. It is simply a request submitted respectfully by a non-political, charitable health organization (CMTA) to promote awareness about the disease.
If you are asked when the letter will be closing, simply explain that time is of the essence.

In order to get the required signatures it’s up to each and every person of voting age to contact his/her U.S. Representatives’ office via phone, e-mail, snail mail and implore them to seek out the “Dear Colleague” letter and sign it. Ask your friends and family to do the same. It doesn’t matter where they live. They can reach out to their own districts through the http://www.opencongress.org website.

Here is another important way you can participate in the “Call to Action!”

Once directed to the contact information at http://www.opencongress.org, you will observe that you can visit your Representative’s website by clicking on the link on the right side of the page. When you visit his/her website, click on “Contact” , “Email Me” (something along those lines) and you will find a form template to contact your representative via e-mail. I urge you to send an email in addition to making the phone call. For your convenience, I have drafted verbiage that you can cut and paste directly into the message box. It’s at the bottom of this information. (You may also personalize yours if you choose to. Just please remember to include the pertinent information below.) Should you decide to print it out and mail it via U.S. Postal Service, please make sure to include your name, address and telephone number on all correspondence.

The form template will ask you for your name, address and phone number.

If you have any questions or need assistance, please don’t hesitate to contact me, Julie Collins, at phantomsec4@yahoo.com.

Let’s get into action CMTA!

This is the perfect chance for us all to be STARS and shine!

Copy the text below and paste in into an email to your Representative!

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.

Resoure: http://cmtausa.org/index.php?option=com_content&view=article&id=458:call-to-action&catid=7:newsflash&Itemid=61

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This entry was posted in Charcot-Marie-Tooth disease, Health CMT, Neurologist, neuromuscular disease, peripheral neuropathy. Bookmark the permalink.

2 Responses to Call to Action!

  1. Pingback: Presidential Proclamation for CMT Awareness Month; We Need Your Help! | Living Well with CMT (Charcot-Marie-Tooth) Disorder

  2. Pingback: Presidential Proclamation for CMT Awareness Month; We Need Your Help! | Living Well with CMT (Charcot-Marie-Tooth)

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