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Advocacy Day - 2013

On March 5th and 6th almost 200 advocates from across the country descended upon Washington, D.C. to advocate on behalf of continued funding of fragile X research and the passage of several pieces of disability related legislation. We were excited to accompany several returning advocates, Ed Hanrahan (Mashpee), Denise Devine (Hadley), Kelley Devine (Hadley) and Kathleen Quinn (Holden), as well as a first time advocate Hamid __ (Lexington.) This was the largest Massachusetts delegation yet! We were also very excited to be joined by Danielle Ridlon (Gorham, ME) who was another first time advocate. The appropriate vehicle is only part from the procedure though. You may also have to make sure that you are capable to manage the Van Lease. A brand new handicap available van is not in everyone’s budget, but you will discover techniques to remedy that, is this right?

This year the advocates had 3 “asks.” For our House Representatives and Senator:

  1. Sign the ‘Dear Colleague’ letter to sustain federal investments in translational research and drug development (NIH and DoD) and dedicated public health initiatives and data collection ( CDC NCBDDD ) at not less than 2012-13 levels of funding specifically aimed at improving the lives of individuals living with Fragile X-associated Disorders and their families. This includes continued implementation of the NIH Research Plan for Fragile X and continued federal support for the Fragile X Clinical & Research Consortium.
  2. Cosponsor the Achieving a Better Life Experience (ABLE) Act to create tax-advantaged savings plans for individuals with disabilities.

For our House Representatives only (There is currently no companion bill in the Senate.):

  1. Cosponsor the Transition toward Excellence, Achievement & Mobility (TEAM) Acts to promote successful transition into adulthood and increased opportunities for post-secondary education and economic advancement.

As part of the visit Rep. Gregg Harper (R-MS), who has a son with fragile X syndrome, took the advocates onto the floor of the House chamber for a bit of a pep rally. He gave a very interesting tour of the chambers, pointing out significant features of the chamber as well as historical details. One bit of information that Rep. Harper also shared was that while his staff is responsible for reading his official e-mail, he personally views every piece of handwritten correspondence. With that in mind we would love to see each of you write a letter to your Representatives and Senators and advocate on behalf of all of our kids!

A few photo from the event:

MA and ME advocates with Rep. Gregg Harper (D-MS)

MA and ME advocates with Rep. Gregg Harper (D-MS)

MA advocates with Rep. Bill Keating (D-MA9)

MA advocates with Rep. Bill Keating (D-MA9)

MA advocates with Rep. Jim McGovern (D-MA2)

MA advocates with Rep. Jim McGovern (D-MA2)

MA and ME advocates with Sen. Elizabeth Warren (D-MA)

MA and ME advocates with Sen. Elizabeth Warren (D-MA)

Advocates from around the country enjoy a post-Advocacy Day dinner

Advocates from around the country enjoy a post-Advocacy Day dinner

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