DATE: May 12, 2008
Your Advocacy Works
On Friday, May 2, 2008, NDSC and NDSS sent an Action Alert urging members to call their Congressional Representative and ask them to join the Congressional Down Syndrome caucus (See Action Alert at the bottom of this News Line). On May 12, 2008, we received an e-mail from Kristin Garesche, legislative staff assistant to Congressman Cathy McMorris-Rogers (R.WA) with an impressive group of Representatives who have joined the caucus. The e-mail reads as follows:
“I just wanted to thank you again for your support for the Congressional Down Syndrome Caucus and help getting Members interested in it. I wanted to update you on our membership. Our co-chairs are Rep. Pete Sessions (TX), Rep. Patrick Kennedy (RI), Rep. Eleanor Holmes Norton (DC) and Rep. McMorris Rodgers (WA).
Our members are Rep. Todd Akin (MO), Rep. Joe Barton (TX), Rep. Steve Buyer (IN), Rep. Dave Camp (MI), Rep. Christopher Carney (PA), Rep. Howard Coble (NC), Rep. Ander Crenshaw (FL), Rep. Lincoln Diaz-Balart (FL), Rep. Charlie Dent (PA), Rep. David Drier (CA), Rep. Mary Fallin (OK), Rep. Tom Feeney (FL), Rep. Rodney Frelinghuysen (NJ), Rep. Doc Hastings (WA), Rep. Jeb Henserling (TX), Rep. Sam Johnson (TX), Rep. Ric Keller (FL), Rep. Steve King (IW), Rep. Mark Kirk (IL), Rep. Doug Lamborn (CO), Rep. Nick Lampson (TX), Rep. Frank LoBiondo (NJ), Rep. Thaddeus McCotter (MI), Rep. John McHugh (NY), Rep. Lynn Westmoreland (GA), Rep. Tim Murphy (PA), Rep. Todd Platts (PA), Rep. George Radonovich (CA), Rep. Tom Reynolds (NY), Rep. Dave Reichert (WA), Rep. Peter Roskam (IL), Rep. Mike Rogers (MI), Rep. Mike Simpson (ID), Rep. Lamar Smith (TX), Rep. John Sullivan (OK), Rep. Pat Tiberi (OH), Rep. Chris Van Hollen (MD), Rep. Greg Walden (OR), Rep. James Walsh (NY) and Rep. Bill Young (FL).
In addition, my boss sent out a video release regarding the Caucus to her constituents last week and she wanted to share it with all of you. http://www.youtube.com/watch?v=WfNAiBj-Hvs.”
If your Representative is not on this list, please call and ask him or her to join the caucus. He or she may contact either Emily Davis, in Congressman Pete Session’s office (202.225.2231) or Kristin Garesche (202.225.2006), in Congresswoman Cathy McMorris-Rogers office.
To find out the name of your Representative, to www.congress.org and key in your zip code. The main switchboard of the Capitol (202) 224-3121 will connect you to your Representatives office.
Ask your member of the House of Representatives to join the Congressional Down Syndrome Caucus House of Representative members:
Pete Sessions (R.TX), Cathy McMorris Rodgers (R.WA), Patrick Kennedy (D.RI) and Eleanor Holmes Norton (D.DC) have sent a Dear Colleague letter asking other House members to join the Congressional Down Syndrome Caucus (CDSC).
According to the letter,
“the caucus will serve as a valuable resource for increasing awareness of those efforts and identifying ways that Congress and relevant departments and agencies of the Federal government can help to meet the needs of individuals with Down syndrome and their value to society. The CDSC will promote public policies to enhance the quality of life of individuals with Down syndrome by:
(1) raising expectations and improving outcomes in education;
(2) eliminating barriers to economic opportunity in employment and in programs that promote savings and investment; and
(3) promoting and funding research that accelerates the development of effective treatments and therapies. In 2008, some additional priorities of the caucus will be to:
Ø Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
Ø To promote inclusiveness for people with Down syndrome.
Ø To help provide family support services and a community of care model.
Ø To protect the rights of those with Down syndrome and make sure those rights are being enforced.”
In addition, the Congressional Down Syndrome Caucus will be holding a briefing for Congressional staff on May 8 to discuss where we are in terms of Down syndrome research. A representative from the National Institutes of Health will be attending as well as Dr. Bill Mobley, the Director of the Neuroscience Institute from Stanford Medical School.
If you have questions about this Call to Action, please contact Susang1961@aol.com or Ricki Sabia at Rsabia@ndss.org. We would also appreciate you letting us know if you contact your Representative.