Congressional Info for Spinal Muscular Atrophy
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| Click here for your copy of H.R. 2149. | |
| Click here for your copy of S. 1158. | |
| Click here for a one page overview of the 2009 SMA Treatment Acceleration Act. | |
| Click here for help contacting your representatives. |
2010 Updates and Action
SMA Treatment Acceleration Act Co-Sponsors as of August 10, 2010
House of Representatives
Sponsor: Rep. Patrick Kennedy (RI)
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Rep. Rodney Alexander (LA) Rep. Jason Altmire (PA) Rep. Spencer Bachus (AL) Rep. Tammy Baldwin (WI) Rep. John Barrow (GA) Rep. Sanford D. Bishop, Jr. (GA) Rep. Timothy H. Bishop (NY) Rep. Earl Blumenauer (OR) Rep. Dan Boren (OK) Rep. Rick Boucher (VA) Rep. Bruce L. Braley (IA) Rep. G. K. Butterfield (NC) Rep. Eric Cantor (VA) Rep. Lois Capps (CA) Rep. Christopher P. Carney (PA) Rep. Kathy Castor (FL) Rep. Ben Chandler (KY) Rep. Travis Childers (MS) Rep. Donna M. Christensen (VI) Rep. Yvette D. Clarke (NY) Rep. Howard Coble (NC) Rep. Gerald E. "Gerry" Connolly (VA) Rep. Jim Cooper (TN) Rep. Charles W. Dent (PA) Rep. Steve Driehaus (OH) Rep. Keith Ellison (MN) Rep. Eliot L. Engel (NY) Rep. Anna G. Eshoo (CA) Rep. Chaka Fattah (PA) Rep. Bob Filner (CA) Rep. John Fleming (LA) Rep. J. 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 J. Hall (NY) Rep. Ralph M. Hall (TX) Rep. Gregg Harper (MS) Rep. Martin Heinrich (NM) Rep. Stephanie Herseth Sandlin (SD) Rep. Brian Higgins (NY) Rep. James A. Himes (CT) Rep. Tim Holden (PA) Rep. Steve Israel (NY) Rep. Henry C. "Hank" Johnson, Jr. (GA) Rep. Walter B. Jones, Jr. (NC) Rep. Steve Kagen (WI) Rep. Dale E. Kildee (MI) Rep. Mary Jo Kilroy (OH) Rep. Ron Kind (WI) Rep. Peter T. King (NY) Rep. Mark Steven Kirk (IL) Rep. James R. Langevin (RI) |
Rep. Tom Latham (IA) Rep. Barbara Lee (CA) Rep. John Lewis (GA) Rep. Daniel Lipinski (IL) Rep. Zoe Lofgren (CA) Rep. Blaine Luetkemeyer (MO) Rep. Daniel B. Maffei (NY) Rep. Carolyn B. Maloney (NY) Rep. Edward J. Markey (MA) Rep. Eric J. J. Massa (NY) Rep. Doris O. Matsui (CA) Rep. Charlie Melancon (LA) Rep. Michael T. McCaul (TX) Rep. Thaddeus G. McCotter (MI) Rep. Mike McIntyre (NC) Rep. Cathy McMorris Rodgers (WA) Rep. Gregory W. Meeks (NY) Rep. Michael H. Michaud (ME) Rep. James P. Moran (VA) Rep. Tim Murphy (PA) Rep. Jerrold Nadler (NY) Rep. Grace F. Napolitano (CA) Rep. Glenn C. Nye, III (VA) Rep. Collin C. Peterson (MN) Rep. Joseph R. Pitts (PA) Rep. Ted Poe (TX) Rep. David E. Price (NC) Rep. Tom Price (GA) Rep. Adam H. Putnam (FL) Rep. Harold Rogers (KY) Rep. Ileana Ros-Lehtinen (FL) Rep. Steven R. Rothman (NJ) Rep. Bobby L. Rush (IL) Rep. Gregorio Sablan (MP) Rep. Robert C. "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 G. Thompson (MS) Rep. Patrick J. Tiberi (OH) Rep. Edolphus Towns (NY) Rep. Paul Tonko (NY) Rep. Fred Upton (MI) Rep. Greg Walden (OR) Rep. Debbie Wasserman Schultz (FL) Rep. Lynn A. Westmoreland (GA) Rep. Charles A. Wilson (OH) 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)
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Sen. Sherrod Brown (OH) Sen. Richard Burr (NC) Sen. Robert P. Casey, Jr. (PA) Sen. Saxby Chambliss (GA) Sen. Dianne Feinstein (CA) Sen. Al Franken (MN) Sen. Kirsten E. Gillibrand (NY) Sen. Kay Hagan (NC) Sen. Johnny Isakson (GA) Sen. John F. Kerry (MA) Sen. Frank R. Lautenberg (NJ) |
Sen. Robert Menendez (NJ) Sen. Patty Murray (WA) Sen. Jack Reed (RI) Sen. Bernard Sanders (VT) Sen. Charles E. Schumer (NY) Sen. Arlen Specter (PA) Sen. Mark R. Warner (VA) Sen. Jim Webb (VA) Sen. Sheldon Whitehouse (RI) Sen. Roger F. Wicker (MS) |
Don't see your Senators and Representatives on this list? Contact us for help contacting your Members of Congress.
Grassroots Update on SMA Treatment Acceleration Act - August 3, 2010
To all of our Friends in the Fight:
It's hard to believe that the summer months are quickly coming to a close. Many of you were just with us in Washington, April 27th for our Annual Conference, The Good Fight! We hope the summer has been fun, relaxing and restful for you all.
As we continue our hard work on the SMA Treatment Acceleration Act (H.R.2149, S.1158) and enter the month of August, we need your help. Elected officials in Washington represent our interests. We want to see a treatment and cure for spinal muscular atrophy (SMA). We need this final push, from August going forward, for Congress to pass OUR bill!
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Every August, your Senators and Members of Congress head home for the district work period: a time to attend local events and interact with their you, constituents. This is a wonderful opportunity to see your Congressional representatives and ask for their help in passing the SMA Treatment Acceleration Act.
With November and elections just around the corner, time is of the essence. There are very few legislative days before the current Congress comes to a close at the end of this year.
Some of your representatives will be hosting "town hall" events or open houses where they welcome constituents - like you - to come and voice their top concerns. If you would be interested in attending one of these town halls to make your voice heard, you can call their district offices and ask if they plan on hosting a town hall or similar event. If not, find out if they will be attending local events where you might be able to speak with them: a festival, 5k race, opening of a community center, etc. You can even ask the district scheduler about making a specific appointment to see your member and tell your family's story.
Remember: these Members of Congress are hired by YOU, the voter. They need to get face time with their constituents before Election Day in November. This is a wonderful opportunity to voice your opinion and support of the SMA Treatment Acceleration Act. They need to hear from you!
Once you've found an opportunity to meet your representative, what do you say?
- If your member is not a cosponsor, ask them to cosponsor the bill. Make it personal (i.e. tell your family's SMA story/connection) and make sure to mention the name and number of the bill. (H.R.2149 in the House, S.1158 in the Senate).
- If your member IS a cosponsor of the bill, be sure to say "thank you!" Then, ask them to contact the Energy and Commerce Committee and let the committee know that passing the SMA Treatment Acceleration Act this year is one of their top priorities.
If you would like further talking points, or any question answered before meeting with your Member, FightSMA is here to help. Feel free to call Caroline Gibson anytime at 804-515-0080, or just send her an email at carolinegibson@fightsma.com. Caroline is here to to help you make this urgent and critical outreach.
Thank you all for your incredible hard work and dedication to seeing this bill through. We are a mighty army. United, we can and will see our dream come true: passage of The SMA Treatment Acceleration Act.
Yours in the fight, FightSMA
August Targeted Grassroots Efforts
We need your help! If you see your Congressman's name on this list, please contact Caroline Gibson (carolinegibson@fightsma.com), FightSMA's Public Affairs Coordinator, immediately for information on how you can reach out to your Members who sit on the Energy & Commerce committee, who can help us pass the SMA Treatment Acceleration Act:
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Steve Eisenberg, Richmonder and SMA patient, writes editorial in Richmond Times-Dispatch - June 28, 2010
On Sunday, June 27, 2010, Richmond local and SMA patient, Steve Eisenberg (pictured left), had his voice heard loud and clear in the Richmond Times-Dispatch. Eisenberg, 32, wrote a letter to the editor about his story and his passion for seeing the SMA Treatment Acceleration Act (HR 2149, S 1158) become law.
Eisenberg thanked the Virginia delegation for their continuous support over the years, especially Congressman Eric Cantor (R-7th) for serving as the lead cosponsor for the bill. Mr. Eisenberg also spoke to the Congressman's important position in leadership, and his ability to help us move this legislation forward as swiftly and efficiently as possible.
The SMA Treatment Acceleration Act, led by Congressmen Patrick Kennedy (D-RI) and Eric Cantor (R-VA) in the House, and Senators Debbie Stabenow (D-MI) and Johnny Isakson (R-GA) in the Senate, currently boasts 106 bipartisan cosponsors in the House, and 20 bipartisan cosponsors in the Senate.
To read Mr. Eisenberg's editorial, please click HERE.
For more information on the SMA Treatment Acceleration Act and how to contact your Members of Congress, please contact Caroline Gibson, Public Affairs Coordinator (804-515-0080 or carolinegibson@fightsma.com).
SMA Treatment Acceleration Act Summer Challenge: 150 Cosponsors - June 2, 2010
Dear Families and Friends,
School's out and summer is officially here - time for rest, relaxation and fun in the sun!
But, we still have a lot of work to do for the SMA Treatment Acceleration Act!
After securing 100 cosponsors in the House, well-surpassing our final total from the 110th Congress of 85 cosponsors, it's time to ramp up grassroots efforts and work towards our new goal: 150 cosponsors!
Be sure to check THOMAS periodically to see if your Members of Congress have signed on as cosponsors. Once they have, be sure to send them a message thanking them for their support!
If your Members have not signed on, here are some ways to make a difference:
- Visit www.PetitionToCureSMA.com and sign your name. Forward the site to friends, family and coworkers, and encourage them to sign in support, too!
- Reach out to your Members of Congress via email, fax, phone and let them know you'd like them to support the SMA Treatment Acceleration Act.
- Schedule a meeting in your Members' district offices during the summer recesses (you can find the 2010 Calendar HERE).
If you need any guidance or help, FightSMA is here as a resource for you. Please do not hesitate to contact Caroline Gibson, Public Affairs Coordinator, at 804-515-0080 or carolinegibson@fightsma.com.
Thank you for all you are doing to help fight SMA!
SMA Treatment Acceleration Act Gets 100th House Cosponsor! - May 14, 2010
Dear Friends of FightSMA,
We are beyond thrilled to announce that on May 13, 2010, the SMA Treatment Acceleration Act (HR 2149, S 1158) officially broke 100 cosponsors in the House! We are delighted by this news and have YOU to thank!
Thanks to your hard work and dedication, we have reached our preliminary goal of 100 cosponsors and look forward to adding more names to the list.
In the 110th Congress, the SMA community built impressive bipartisan support for the bill and reached 85 cosponsors at the close of session. It is incredible and inspiring that we have surpassed that number in the 111th Congress.
Congratulations.
If your Congressman or Senators have not signed on yet and you'd like to see their name added to the list, we encourage you to reach out to your Members and let them know just how important this legislation is to you and to your community. If you'd like help with this outreach, please contact our office (carolinegibson@fightsma.com, 804-515-0080).
Thank you again for all you do to fight spinal muscular atrophy, the number-one genetic killer of children under the age of two.
Warmly,
Caroline Gibson
Public Affairs Coordinator
100th Co-Sponsor in the House - May 12, 2010
Just received word that the 100th member of the House of Representatives will sign on as a co-sponsor of the SMA Treatment Acceleration Act. Will update list when it is officially posted.
Grassroots Update on the SMA Treatment Acceleration Act - April 20, 2010
Greetings SMA families, researchers and friends:
Thank you for all you have done to increase awareness and attention towards efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all those who have taken the time to contact their Members of Congress in support of The SMA Treatment Acceleration Act (H.R. 2149/S. 1158).
As most of you are aware, for the past 15 months health care reform has consumed the attention of Members of Congress and their health care staff. Now that Congress has completed its work on health care reform, Members and staff are in the process of determining which outstanding health-related bills will be acted upon by Congress before the 111th Congress comes to a close this fall. As Members and staff begin to decide which pieces of legislation will move this Congress, it is important that we continue to engage every Member of Congress in support of the SMA Treatment Acceleration Act.
Thanks to your efforts, 90 Members of the House of Representatives and 15 Senators have now signed on to the SMA legislation. Our goal continues to be to encourage as many Members as possible to cosponsor, with particular attention paid to Members who cosponsored the bill in the previous (110th) Congress but have not yet signed on to the bill again in the current (111th) Congress. A list of our current cosponsors, as well as our target House and Senate cosponsors from the 110th Congress, are provided below. Once again we ask for your help, the time to act is now! PLEASE contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.
The SMA Treatment Acceleration Act, 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 |
NOTE: If you have any questions about the "SMA Treatment Acceleration Act" or for more information, please feel free to contact any one of our Government Affairs staff:
Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
David Miller, MDA, dmiller@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com
111th Congress Cosponsors
In the House (90):
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Sponsor: Rep. Patrick Kennedy (RI) Rep. Rodney Alexander (LA) Rep. Jason Altmire (PA) Rep. Spencer Bachus (AL) Rep. Tammy Baldwin (WI) Rep. Sanford D. Bishop, Jr. (GA) Rep. Timothy H. Bishop (NY) Rep. Earl Blumenauer (OR) Rep. Dan Boren (OK) Rep. Rick Boucher (VA) Rep. Bruce L. Braley (IA) Rep. G. K. Butterfield (NC) Rep. Lois Capps (CA) Rep. Christopher P. Carney (PA) Rep. Kathy Castor (FL) Rep. Donna M. Christensen (VI) Rep. Yvette D. Clarke (NY) Rep. Jim Cooper (TN) Rep. Charles W. Dent (PA) Rep. Steve Driehaus (OH) Rep. Keith Ellison (MN) Rep. Anna G. Eshoo (CA) Rep. John Fleming (LA) Rep. J. 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 J. Hall (NY) Rep. Ralph M. Hall (TX) Rep. Gregg Harper (MS) Rep. Martin Heinrich (NM) Rep. Stephanie Herseth Sandlin (SD) Rep. Brian Higgins (NY) Rep. James A. Himes (CT) Rep. Tim Holden (PA) Rep. Steve Israel (NY) Rep. Henry C. "Hank" Johnson, Jr. (GA) Rep. Walter B. Jones, Jr. (NC) Rep. Steve Kagen (WI) Rep. Dale E. Kildee (MI) Rep. Ron Kind (WI) Rep. Peter T. King (NY) Rep. James R. Langevin (RI) |
Sponsor: Rep. Eric Cantor (VA) Rep. Barbara Lee (CA) Rep. Zoe Lofgren (CA) Rep. Carolyn B. Maloney (NY) Rep. Edward J. Markey (MA) Rep. Eric J. J. Massa (NY) Rep. Michael T. McCaul (TX) Rep. Thaddeus G. McCotter (MI) Rep. Mike McIntyre (NC) Rep. Cathy McMorris Rodgers (WA) Rep. Gregory W. Meeks (NY) Rep. James P. Moran (VA) Rep. Tim Murphy (PA) Rep. Jerrold Nadler (NY) Rep. Grace F. Napolitano (CA) Rep. Glenn C. Nye, III (VA) Rep. Collin C. Peterson (MN) Rep. Joseph R. Pitts (PA) Rep. Ted Poe (TX) Rep. Tom Price (GA) Rep. Adam H. Putnam (FL) Rep. Harold Rogers (KY) Rep. Ileana Ros-Lehtinen (FL) Rep. Steven R. Rothman (NJ) Rep. Bobby L. Rush (IL) Rep. Gregorio Sablan (MP) Rep. Robert C. "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. Bennie G. Thompson (MS) Rep. Patrick J. Tiberi (OH) Rep. Edolphus Towns (NY) Rep. Paul Tonko (NY) Rep. Fred Upton (MI) Rep. Debbie Wasserman Schultz (FL) Rep. Lynn A. Westmoreland (GA) Rep. Charles A. Wilson (OH) Rep. Joe Wilson (SC) Rep. Robert J. Wittman (VA) Rep. Frank R. Wolf (VA) Rep. David Wu (OR) Rep. C.W. Bill Young (FL) |
In the Senate (15):
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Sponsor: Sen. Debbie Stabenow (MI) Sen. Sherrod Brown (OH) Sen. Richard Burr (NC) Sen. Saxby Chambliss (GA) Sen. Kirsten E. Gillibrand (NY) Sen. Kay Hagan (NC) Sen. John F. Kerry (MA) Sen. Frank R. Lautenberg (NJ) |
Sponsor: Sen. Johnny Isakson (GA) Sen. Robert Menendez (NJ) Sen. Patty Murray (WA) Sen. Jack Reed (RI) Sen. Bernard Sanders (VT) Sen. Arlen Specter (PA) Sen. Sheldon Whitehouse (RI) Sen. Roger F. Wicker (MS) |
110th Congress Cosponsors Targets
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House Rep. Brian Baird (WA) Rep. Norman Dicks (WA) Rep Peter Hoekstra (MI) Rep. Jay Inslee (WA) Rep. Jack Kingston (GA) Rep. Mark Kirk (IL) Rep. Nita Lowey (NY) Rep. Jim Marshall (GA) Rep. Candice Miller (MI) Rep. Donald Payne (NJ) Rep. David Price (NC) Rep. Mike Ross (AR) Rep. Lucille Roybal-Allard (CA) Rep. Tim Ryan (OH) Rep. Cliff Stearns (FL) Rep. Lynn Woolsey (CA) |
Senate Sen. Jeff Bingaman (NM) Sen. Barbara Boxer (CA) Sen. Maria Cantwell (WA) Sen. Robert Casey (PA) Sen. Dianne Feinstein (CA) Sen. Joseph Lieberman (CT) Sen. Barbara Mikulski (MD) Sen. Jim Webb (VA) |
For a hard copy of this update, click here.
February 26, 2010 - FightSMA's February Grassroots Lobbying Efforts
FightSMA representatives Martha Slay and Caroline Gibson traveled to Washington, D.C. earlier this week, to garner support and cosponsors for the SMA Treatment Acceleration Act (HR 2149, S 1158).
As the healthcare debate continues in Congress, we are working hard to keep our message and our mission front and center on Capitol Hill: the passage of the first-ever federal legislation dedicated to spinal muscular atrophy.
Because the Energy & Commerce committee is the committee of jurisdiction in the House, FightSMA visited Committee Members offices, sharing information on the bill with Health Staff, as well as signatures from PetitionToCureSMA.com.
Offices Visited
Rep. Mike Ross (AR)
Rep. John Barrow (GA)
Rep. Mike Doyle (PA)
Rep. Charlie Melancon (LA)
Rep. Tim Murphy (PA)
Rep. Cliff Stearns (FL)
Rep. Edward Markey (MA)
Rep. Eliot Engel (NY)
Rep. John Dingell (MI)
Rep. Zach Space (OH)
Rep. Baron Hill (IN)
Rep. Bart Stupak (MI)
Rep. Nathan Deal (GA)
In addition to House Energy & Commerce Committee Member offices, FightSMA also visited in Congressman Patrick Kennedy and Congressman Eric Cantor's offices, our lead House sponsors, to thank them for their hard work and dedication to finding a cure for SMA.
Click here to sign the Petition To Cure SMA.
To contact your Members of Congress, please contact CarolineGibson@FightSMA.com