Legislative Action
SMA Treatment Acceleration Act
August 2010 Update: SMA Treatment Acceleration Act Cosponsors now include Representatives Dean Heller, Howard Coble, Greg Walden, and David Price. Special thanks to the families that helped obtain this support. There are now 111 co-sponsors in the House and 21 in the Senate. For a complete list of co-sponsors, click here.
May 2009 Grassroots Nationwide Call to Action: please click here.
February 2009 Update for Families: please click here.
October 2008 Update to the SMA Treatment Acceleration Act: please click here.
Legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 2149 and S. 1158, "The SMA Treatment Acceleration Act", has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). U.S. Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA) have introduced companion legislation in the Senate.
In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including the SMA Foundation, MDA, FightSMA, and Families of SMA has united behind the SMA Treatment Acceleration Act, legislation aimed primarily at supporting a national clinical trials network for SMA.
Specifically, "The SMA Treatment Acceleration Act" provides for the following:
- Federal support for a national clinical trials network for SMA;
- Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA;
- Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments;
- Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research;
- Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry;
- Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public
SMA Treatment Acceleration Act Call to Action
We need your help! Answer our call to action by clicking here and writing to your Representative today.
SMA Treatment Acceleration Act Cosponsors
In the House (111) | |
| Rep. Patrick Kennedy (RI) Sponsor | Rep. Eric Cantor (VA) Sponsor |
| Rep. Rodney Alexander (LA) | Rep. Jason Altmire (PA) |
| Rep. Spencer Bachus (AL) | Rep. Tammy Baldwin (WI) |
| Rep. John Barrow (GA) | Rep. Sanford Bishop (GA) |
| Rep. Timothy Bishop (NY) | Rep. Earl Blumenauer (OR) |
| Rep. Dan Boren (OK) | Rep. Rick Boucher (VA) |
| Rep. Bruce Braley (IA) | Rep. G.K. Butterfield (NC) |
| Rep. Lois Capps (CA) | Rep. Christopher Carney (PA) |
| Rep. Kathy Castor (FL) | Rep. Ben Chandler (KY) |
| Rep. Travis Childers (MS) | Rep. Donna Christensen (VI) |
| Rep. Yvette Clarke (NY) | Rep. Howard Coble (NC) |
| Rep. Gerry Connolly (VA) | Rep. Jim Cooper (TN) |
| Rep. Charles Dent (PA) | Rep. Steve Driehaus (OH) |
| Rep. Keith Ellison (MN) | Rep. Eliot Engel (NY) |
| Rep. Anna Eshoo (CA) | Rep. Chaka Fattah (PA) |
| Rep. Bob Filner (CA) | Rep. John Fleming (LA) |
| Rep. Randy Forbes (VA) | Rep. Jeff Fortenberry (NE) |
| Rep. Barney Frank (MA) | Rep. John Garamendi (CA) |
| Rep. Bob Goodlatte (VA) | Rep. Bart Gordon (TN) |
| Rep. Gene Green (TX) | Rep. John Hall (NY) |
| Rep. Ralph Hall (TX) | Rep. Gregg Harper (MS) |
| Rep. Martin Heinrich (NM) | Rep. Stephanie Herseth Sandlin (SD) |
| Rep. Brian Higgins (NY) | Rep. James Himes (CT) |
| Rep. Tim Holden (PA) | Rep. Steve Israel (NY) |
| Rep. Henry Johnson (GA) | Rep. Walter Jones (NC) |
| Rep. Steve Kagen (WI) | Rep. Dale Kildee (MI) |
| Rep. Mary Jo Kilroy (OH) | Rep. Ron Kind (WI) |
| Rep. Peter King (NY) | Rep. Mark Kirk (IL) |
| Rep. James Langevin (RI) | Rep. Tom Latham (IA) |
| Rep. Barbara Lee (CA) | Rep. John Lewis (GA) |
| Rep. Daniel Lipinski (IL) | Rep. Blaine Luetkemeyer (MO) |
| Rep. Zoe Lofgren (CA) | Rep. Daniel Maffei (NY) |
| Rep. Carolyn Maloney (NY) | Rep. Edward Markey (MA) |
| Rep. Eric Massa (NY) | Rep. Doris Matsui (CA) |
| Rep. Michael McCaul (TX) | Rep. Thaddeus McCotter (MI) |
| Rep. Mike McIntyre (NC) | Rep. Cathy McMorris Rodgers (WA) |
| Rep. Gregory Meeks (NY) | Rep. Charlie Melancon (LA) |
| Rep. Michael Michaud (ME) | Rep. James Moran (VA) |
| Rep. Tim Murphy (PA) | Rep. Jerrold Nadler (NY) |
| Rep. Grace Napolitano (CA) | Rep. Glen Nye (VA) |
| Rep. Collin Peterson (MN) | Rep. Joseph Pitts (PA) |
| Rep. Ted Poe (TX) | Rep. David Price (NC) |
| Rep. Tom Price (GA) | Rep. Adam Putnam (FL) |
| Rep. Harold Rogers (KY) | Rep. Ileana Ros-Lehtinen (FL) |
| Rep. Steve Rothman (NJ) | Rep. Bobby Rush (IL) |
| Rep. Gregorio Sablan (MP) | Rep. Bobby Scott (VA) |
| Rep. Joe Sestak (PA) | Rep. Albio Sires (NJ) |
| Rep. Louise McIntosh Slaughter (NY) | Rep. Jackie Speier (CA) |
| Rep. Fortney Pete Stark (CA) | Rep. Gene Taylor (MS) |
| Rep. Bennie Thompson (MS) | Rep. Patrick Tiberi (OH) |
| Rep. Paul Tonko (NY) | Rep. Edolphus Towns (NY) |
| Rep. Fred Upton (MI) | Rep. Greg Walden (OR) |
| Rep. Debbie Wasserman Schultz (FL) | Rep. Lynn Westmoreland (GA) |
| Rep. Charles Wilson (OH) | Rep. Joe Wilson (SC) |
| Rep. Robert Wittman (VA) | Rep. Frank Wolf (VA) |
| Rep. David Wu (OR) | Rep. C.W. Bill Young (FL) |
In the Senate (21) | |
| Sen. Debbie Stabenow (MI) Sponsor | Sen. Johnny Isakson (GA) Sponsor |
| Sen. Sherrod Brown (OH) | Sen. Richard Burr (NC) |
| Sen. Robert Casey (PA) | Sen. Saxby Chambliss (GA) |
| Sen. Dianne Feinstein (CA) | Sen. Al Franken (MN) |
| Sen. Kristen Gillibrand (NY) | Sen. Kay Hagan (NC) |
| Sen. John Kerry (MA) | Sen. Frank Lautenberg (NJ) |
| Sen. Robert Menendez (NJ) | Sen. Patty Murray (WA) |
| Sen. Jack Reed (RI) | Sen. Bernard Sanders (VT) |
| Sen. Charles Schumer (NY) | Sen. Arlen Specter (PA) |
| Sen. Mark Warner (VA) | Sen. Jim Webb (VA) |
| Sen. Sheldon Whitehouse (RI) | Sen. Roger Wicker (MS) |
Archives
For additional information about SMA Foundation activities in regards to Legislative Action from 2004 to 2007, please click here. For 2008, please click here.
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