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Advocacy Day Round-up **Action Requested!**

For the past 4 years Eric & I have been attending the National Fragile X Foundation’s annual Advocacy Day in Washington, DC. This year our son, Caleb (9, FXS), joined the Massachusetts delegation for the first time. Also in attendance from Massachusetts were Denise & Kelley Devine and Kathleen Quinn. Ed Hanrahan, a long time Advocacy Day attendee was scheduled to be there but, due to the winter storm, he was unable to make it.

Meetings for Advocacy Day are set up in advance for the attendees. Meetings can only be set up with a Congressional office if you have a constituent in attendance. This year our team of 6 was able to set up only 2 meetings out of a possible 9 House districts. In past years we have covered up to 5 but because of redistricting and lower participation, we have had our reach reduced. The Massachusetts Members of Congress are historically among the strongest supporters of health care and medical research. Each one is a potential ally in our fight for research funding and increased awareness but only if they hear from us!

We received a warm reception with those Members of Congress and their staff that we did meet with. Caleb made quite an impression on Representative Clark and her staff at our late afternoon meeting. She told us how influential self-advocates like Caleb are in helping her decide what to support. At a meet and greet with Senator Warren, she recalled meeting the Massachusetts advocates last year and reported that she had signed on to the ABLE Act as a co-Sponsor because we asked. The ABLE Act is just one piece of legislation we have been supporting for many years. It was nice to hear that our voices have made a difference!

Because we do know our voices make a difference, we are asking each of you to write letters to your Representative in an effort to reach those we missed this year.  Please do your best to get your letter mailed by April 4th, Congress is discussing the budget for next year and this is the time to get our requests in!

This is a sample letter to help you get started:

March 17, 2014

Dear Representative Clark,

On March 5, 2014 nearly 170 advocates from around the country, including 6 from Massachusetts, attended the National Fragile X Foundation’s annual Advocacy Day in Washington, DC. I was, unfortunately, not able to attend.

My son Caleb, age 9, has fragile X syndrome. Fragile X is the leading known inherited cause of intellectual disability and the leading known genetic cause of autism. Fragile X is one member of a family of disorders called Fragile X-associated Disorders (FXDs).  Altogether the FXDs affect an estimated 1,000,000 Americans.

Research and drug development funding for Fragile X is provided by the NIH and the DOD. The CDC provides funding for dedicated public health initiatives and data collection for Fragile X.  I am asking you to support continued funding at the current levels for Fragile X through those agencies. Our Champions in the House, Representatives Engle and Harper, have circulated a “Dear Colleague” letter asking you to sign on to a Letter to Appropriators in support of this request. I am asking you to please sign on to that letter.

Approximately 100 genes have so far been identified as playing a role in Autism. Research has shown that about half of those genes are affected by the same protein that causes Fragile X. Fragile X is a gateway disorder that has already shown promise in providing real treatments for people with Autism Spectrum Disorder. We would like the House Energy & Commerce Committee to convene a hearing on the intersection between Fragile X and autism. A letter making this request will be circulating shortly, please contact Scott Mulvaney in Congressman Harper’s office to sign on to the letter requesting this hearing.

And finally, for the past seven years, the National Fragile X Foundation, along with many other disability organizations, has been advocating for the passage of the ABLE Act. I know you are already a co-sponsor of this important piece of legislation. Currently there are over 350 Members of Congress signed on as co-sponsors. The bill has broad, bi-partisan support. A letter has been sent to House Leadership asking that the ABLE Act be brought to the House Floor for a vote as soon as possible. Please support that initiative in any way possible.

Thank you very much for your time.

Sincerely,

Melissa Welin
63 Griswold Street
Cambridge, MA 02138
Melissa@fragilexma.org

Two notes:

  1. All Members of Congress from Massachusetts have signed on as co-Sponsors of the ABLE Act, the language above can be used as is for every Representative. If you would like to write to your Senators as well, send me an email (melissa@fragilexma.org) and I will give you the slightly different language for the Senators.
  2. We have been told by Representative Gregg Harper, who has a son with Fragile X, that handwritten notes almost always make it to the Member’s desk (hate mail, does not!) Emails will be read by staff members but are generally not passed along because of the volume of emails received. If you can, please send handwritten letters. If you cannot, please at least send an email.

To find your Representative, use this link:

Find Your Representative

Thank you all for your help moving Fragile X research and awareness forward! Next year we are hoping to have a larger Massachusetts contingent present!

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