Thanks to everyone who participated in Fragile X Advocacy Day 2012. It is now one for the books, as they say, but our work is by no means finished. More than 150 advocates registered and most attended. We represented nearly 2/3 of the U.S. with great energy and pride. We spent two glorious day together as Tuesday was sunny and in the 60’s and Wednesday was sunny and in the 70’s.
The advocates I’ve spoken with said they found the experience enlightening and enriching. I’ve also spoken with a number of congressional offices and our advocates got rave reviews on both the content they delivered and the dignified way they represented the entire Fragile X community. In the meetings I attended we conveyed touching stories and experienced both sincere tears and beautiful laughter when describing and displaying our lives with Fragile X.
The greeting from Congressman Gregg Harper on the Floor of the House was once again spectacular and inspiring and really set the tone for the day. We would like to thank all of our Fragile X Champions, Congressman Gregg Harper (R – MS), Congressman Eliot Engel (D-NY), Senator Debbie Stabenow (D – MI) and Senator Johnny Isakson (R – GA). I encourage you to write to our champions and thank them for their continued support.
House of Representatives
- Congressman Gregg Harper (R – MS)
- Staff contact: Scot Malvaney Scot.Malvaney@mail.house.gov
- Congressman Eliot Engel (D-NY)
- Staff contact: Cristina Batt Cristina.Batt@mail.house.gov
United States Senate
- Senator Debbie Stabenow (D – MI)
- Staff contact: Alex Sheff firstname.lastname@example.org
- Senator Johnny Isakson (R – GA)
- Staff contact: Francie Pastor Francie_Pastor@isakson.senate.gov
Our advocates know there’s still much work to be done and everyone can join as this year in Washington, DC wears on. Watch for Action Alerts, join us on Facebook and next year when we will once again do our best to make the world a better place for our kids and everyone whose life is touched by Fragile X.
Jeffrey Cohen, JD
Director of Government Affiars