raise your voice & raise hope for javier!
Harry delivering letters to Congressman Lee Zeldin
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:
204 Christian Avenue
Stony Brook, NY 11790
Some key facts to remember:
But who DO I WRITE to?
435 members in the House of Representatives
100 members in the Senate
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.
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.
City, State, Zip
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.
[Insert your name]