2009 July | Spinal Muscular Atrophy

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help us increase awareness and attention towards our efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158).

Thanks to your efforts, 27 Members of the House of Representatives and 6 Senators have now signed on to the SMA legislation. In order to keep this bill moving through the legislative process, we need to continue to grow the number of cosponsors of the bill. Our goal continues to be to encourage previous cosponsors from the 110th Congress to sign on to the bill again, while at the same time adding new members to the ranks. A list of our current cosponsors, as well as our target House and Senate cosponsors from the 110th Congress, are provided below. More than ever, we need your help! PLEASE contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.

Additionally, the August recess, which begins Monday, August 3rd for the House and Monday, August 10th for the Senate and goes until Labor Day, Monday, September 7th, is an ideal time for families to arrange meetings with their Representatives and Senators in their district offices. District meetings offer a unique opportunity to focus Members’ attention on the SMA bill while they are away from the constant demands of their work on healthcare reform and other issues in Washington. PLEASE contact your Member of Congress and Senators’ district offices and request to meet with them over the August recess.

As most of you are aware, the SMA Treatment Acceleration Act of 2009, introduced in the U.S. House of Representatives by Congressmen Patrick Kennedy (RI) and Eric Cantor (VA) and in the U.S. Senate by Senators Debbie Stabenow (MI) and Johnny Isakson (GA), provides federal support to complement the substantial private funding that is being invested to find a treatment for SMA. Passage of this landmark legislation will enable scientific investigators to expedite national clinical trials and demonstrate that potential treatments are safe and effective for SMA patients.

THANK YOU AGAIN for your help for all those with SMA!

Sincerely,

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:

Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
Annie Kennedy, MDA, akennedy@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com

111th Congress Co-Sponsors

House of Representatives
Sponsor: Rep. Patrick Kennedy (RI)
Rep. Eric Cantor (VA)
Rep. Earl Blumenauer (OR)
Rep. Lois Capps (CA)
Rep. Yvette Clarke (NY)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Bob Goodlatte (VA)
Rep. Gregg Harper (MS)
Rep. Stephanie Herseth Sandlin (SD)
Rep. Brian Higgins (NY)
Rep. James Himes (CT)
Rep. James R. Langevin (RI)
Rep. Carolyn B. Maloney (NY)
Rep. Thaddeus G. McCotter (MI)
Rep. Mike McIntyre (NC)
Rep. Cathy McMorris Rodgers (WA)
Rep. Gregory W. Meeks (NY)
Rep. Adam Putnam (FL)
Rep. Joe Sestak (PA)
Rep. Bennie Thompson (MS)
Rep. Patrick J. Tiberi (OH)
Rep. Edolphus Towns (NY)
Rep. Joe Wilson (SC)
Rep. Robert J.Wittman (VA)
Rep. Frank R. Wolf (VA)
Rep. David Wu (OR)
Rep. C.W. Bill Young (FL)

Senate
Sponsor: Sen. Debbie Stabenow (MI)
Sen. Sherrod Brown (OH)
Sen. Johnny Isakson (GA)
Sen. John Kerry (MA)
Sen. Patty Murray (WA)
Sen. Bernard Sanders (VT)
Sen. Sheldon Whitehouse (RI)

110th Congress Cosponsors Targets

House of Representatives

Rep. Rodney Alexander (LA)
Rep. Jason Altmire (PA)
Rep. Brian Baird (WA)
Rep. Tammy Baldwin (WI)
Rep. Timothy H. Bishop (NY)
Rep. Dan Boren (OK)
Rep. Rick Boucher (VA)
Rep. G. K. Butterfield (NC)
Rep. Lois Capps (CA)
Rep. Christopher Carney (PA)
Rep. Kathy Castor (FL)
Rep. Jim Cooper (TN)
Rep. Norman Dicks (WA)
Rep. Anna Eshoo (CA)
Rep. Randy Forbes (VA)
Rep. Bart Gordon (TN)
Rep. Gene Green (TX)
Rep. Ralph Hall (TX)
Rep. Peter Hoekstra (MI)
Rep. Jay Inslee (WA)
Rep. Henry C. “Hank” Johnson, Jr. (GA)
Rep. Dale E. Kildee (MI)
Rep. Ron Kind (WI)
Rep. Jack Kingston (GA)
Rep. Mark Steven Kirk (IL)
Rep. Zoe Lofgren (CA)

Rep. Nita Lowey (NY)
Rep. Edward Markey (MA)
Rep. Jim Marshall (GA)
Rep. Michael T. McCaul (TX)
Rep. John McHugh (NY)
Rep. Candice Miller (MI)
Rep. James Moran (VA)
Rep. Tim Murphy (PA)
Rep. Jerrold Nadler (NY)
Rep. Grace Napolitano (CA)
Rep. Donald M. Payne (NJ)
Rep. Collin C. Peterson (MN)
Rep. David E. Price (NC)
Rep. Tom Price (GA)
Rep. Ileana Ros-Lehtinen (FL)
Rep. Mike Ross (AR)
Rep. Steve Rothman (NJ)
Rep. Lucille Roybal-Allard (CA)
Rep. Tim Ryan (OH)
Rep. Robert C. “Bobby” Scott (VA)
Rep. Fortney Pete Stark (CA)
Rep. Cliff Stearns (FL)
Rep. Debbie Wasserman Schultz (FL)
Rep. Lynn Westmoreland (GA)
Rep. Charles A. Wilson (OH)
Rep. Lynn C. Woolsey (CA)

Senate

Sen. Jeff Bingaman (NM)
Sen Barbara Boxer (CA)
Sen. Maria Cantwell (WA)
Sen. Robert P. Casey, Jr. (PA)
Sen. Saxby Chambliss (GA)
Sen. Dianne Feinstein (CA)

Sen. Frank Lautenberg (NJ)
Sen. Joseph Lieberman (CT)
Sen. Rob Menendez (NJ)
Sen. Barbara Mikulski (MD)
Sen. Jack Reed (RI)
Sen. Jim Webb (VA)

To download this update, click here.

Jeff Horton is a Dad. But he’s not just any Dad — he’s a Fighter Dad. After his daughter, Evie, was diagnosed with Spinal Muscular Atrophy (SMA), Jeff became proactive in getting the word out about the disease. SMA, as you might know, is the number-one inherited killer of children under the age of two.

Jeff Horton with Congressman Harper of Miss. In April 2009, Jeff attended his first FightSMA Annual Conference in Washington, DC, and participated in the annual Capitol Hill Day. You can see him to the right with Congressman Gregg Harper of Jeff’s home state of Mississippi. In preparation, Jeff did some work “in the field” back home in order to gain the support of his Members of Congress. He had one goal: to get all of his Members to sign on as cosponsors for the SMA Treatment Acceleration Act.