raise your voice & raise hope for javier! 

 

Harry & ZeldinHarry delivering letters to Congressman Lee Zeldin

Dear Friends,

Every year since Javier was diagnosed, my amazing sister (Anastasia) and awesome nephew (Harry) travel to Washington, DC in freezing February to advocate on behalf of Javier and all boys with Duchenne Muscular Dystrophy. 

Last year they were there to ask our Congressmen and Senators to sign on to a fiscal year 2016 Duchenne Muscular Dystrophy (DMD) appropriations letter.  Thanks to a grassroots groundswell of support, they were able to deliver hundreds of letters to your respective representatives.  They had over 100 letters for Congressman Lee Zelden alone!  He was so impressed with the support from his district, he was one of the first to sign on to the appropriations letter, as did Senators Schumer and Gillibrand.  This year we are asking our local Congressman and our Senators to support continued funding for research at the NIH.

If you or your son or daughter (or niece or nephew or neighbor – we’ll take ‘em all!) would like to help Javier and all boys with DMD by participating in the process, you can write a letter that they will hand deliver.  Below is some information about Duchenne Muscular Dystrophy and Javier, as well as a sample letter that can be used as a rough draft (cutting and pasting and adding some of your own words takes just a couple minutes).  Everyone who writes a letter (adults included) is one of “Javier’s Heroes” and each will receive an “it matters to me” wristband.  If you like to super size your involvement, in past years our supporters have reached out to their children’s teachers and/or religious groups to help organize larger letter writing campaigns.  Sports teams are also good groups to reach out to as well! Please forward this letter to anyone who might be interested in taking part in this project, including friends from other districts.  We will make sure letters get delivered to the appropriate Congressperson and/or Senators.

Please send letters to Anastasia’s home address by Friday, February 12th: 
Anastasia Portnoy 
204 Christian Avenue 
Stony Brook, NY 11790 

 

Some key facts to remember:
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood.  It effects approximately 1 out of every 3,500 boys born.  As these boys age and their muscles weaken they gradually lose the ability to walk, feed themselves, and breathe without assistance.  The progression of the disease leads to serious medical problems such as respiratory failure, heart failure, and debilitating orthopedic complications..   Young men with Duchenne typically live only into their twenties.
Javier is 11 and has been confined to a wheelchair for several years. He is no longer able to stand or lift his arms, however, nothing stops him!  Javier has a motorized wheelchair that he zooms around in.   He has a canine companion named Nevin who gives him lots of love and attention, he has a very funny sense of humor, enjoys playing video games and is a math whiz.
Advocacy is the act of giving support to an idea, person, or cause.  It is an important part of being a citizen of the United States.  It is at the heart of American Democracy.  What better way to experience this than to advocate about an issue directly with your members of Congress?
Kids Advocating to Help Kids (adults too!): There are many ways to advocate. As you know Congress creates laws, it is one of their most important functions. All laws in the United States begin as bills. Before a bill can become a law, the U.S. House of Representatives, the U.S. Senate, and the President must approve it. The public advocates for bills they support and want to be become law. As important members of the public, kids advocate too! Kids advocate for issues they believe to be important, issues that can help change the world. Your voice can make all the difference.
But who DO I WRITE  to?
There are 535 voting members of Congress: 
435 members in the House of Representatives
100 members in the Senate
You have 2 US Senators and 1 US House Representative in Congress.
If you live in NY state your two Senators are Senator Schumer and Senator Gillibrand.
If you live in the Three Village area (like Javier) or anywhere east of it, your US House Representative is Congressman Lee Zeldin.
You can use this link to find the name of your representative if you live in another area:

FIND MY REP

Below is a sample letter formatted for Congressman Zeldin:
If you would like to write the same letter to your senators, or a representative from another district all you need to do is change the address block.  
All letters will be hand delivered to the appropriate representative and senator, regardless of what state they come from – so feel free to forward this outside of New York. 

 

Your name
Address
City, State, Zip

Date

The Honorable Congressman Lee Zeldin
1517 Longworth House Office Building,
Washington, DC 20515

Dear Congressman Zeldin,

My name is [Insert Your Name] and I reside at [Insert Your Address] in [Insert Your City], New York.  I am in the [Insert your grade] grade at [Insert Your School]

I am writing to you because…  (here you can write about Javier, an 11-year-old boy from Stony Brook, NY with Duchenne Muscular Dystrophy, and why helping him and other boys with Duchenne is important to you.  If you know Javier – or know of him, it is nice to include something about that relationship because it personalizes the letter – but it’s not necessary!).

Please support continued funding for research at the NIH and creating policy to improve the lives of all people living with Duchenne Muscular Dystrophy (DMD).  It is the most common fatal genetic disorder diagnosed in childhood.  It results in progressive loss of strength and a life expectancy of age 20.  Congressman, please consider helping my friend Javier and all boys with DMD live a longer and healthier life.

Thank you for your time and considering my request.

Sincerely,
[Insert your name]