Congressional Info for Spinal Muscular Atrophy

2009 Updates and Action

SMA Treatment Acceleration Act Co-Sponsors as of December 16, 2009

House of Representatives

Sponsor: Rep. Patrick Kennedy (RI)
Rep. Rodney Alexander (LA)
Rep. Tammy Baldwin (WI)
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. Yvette D. Clarke (NY)
Rep. Jim Cooper (TN)
Rep. Donna M. Christensen (VI)
Rep. Charles W. Dent (PA)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Barney Frank (MA)
Rep. J. Randy Forbes (VA)
Rep. Jeff Fortenberry (NE)
Rep. Gene Green (TX)
Rep. Bob Goodlatte (VA)
Rep. Bart Gordon (TN)
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. 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)
Rep. Zoe Lofgren (CA)
Rep. Carolyn B. Maloney (NY)
Rep. Eric J. J. Massa (NY)
Rep. Michael T. McCaul (TX)
Rep. Thaddeus G. McCotter (MI)
Rep. Cathy McMorris Rodgers (WA)
Rep. Mike McIntyre (NC)
Rep. Gregory W. Meeks (NY)
Rep. James P. Moran (VA)
Rep. Glenn C. Nye, III (VA)
Rep. Collin C. Peterson (MN)
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. Robert C. "Bobby" Scott (VA)
Rep. Joe Sestak (PA)
Rep. Louise McIntosh Slaughter (NY)
Rep. Fortney Pete Stark (CA)
Rep. Bennie G. Thompson (MS)
Rep. Patrick J. Tiberi (OH)
Rep. Edolphus Towns (NY)
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)
Sen. Sherrod Brown (OH)
Sen. Richard Burr (NC)
Sen. Saxby Chambliss (GA)
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. Arlen Specter (PA)
Sen. Sheldon Whitehouse (RI)
Sen. Roger F. Wicker (MS)

Don't see your Representatives on this list? Contact us for help contacting your Members of Congress.

November 2, 2009 - Grassroots Update

Dear SMA families, researchers, clinicians and friends,

Thank you again for all you have done to help increase awareness and attention towards our efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). As we continue to promote the SMA Treatment Acceleration Act (H.R. 2149/S. 1158) in the current Congress, many important questions have been posed regarding the status of the bill, the political climate in Washington, and the need for sustained grassroots engagement. In response to these queries, we have put together a list of frequently asked questions (FAQs). Please find below answers to these FAQs.

We hope that this information clarifies the incredible progress made to date and the path forward for the SMA Treatment Acceleration Act. Your continued support for the Act is the key component of our strategy to see this legislation enacted. While we cannot make guarantees of success, we can state unequivocally that we are making excellent progress and have a strategy in place to accomplish our goal. The legislative process requires persistence and patience - please continue to remain engaged and active participants as you are integral to our success.

Thank you very much for your continued support and involvement.

Sincerely,
The SMA Government Relations Team

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

NOTE: If you have additional questions about the "SMA Treatment Acceleration Act" or for more information, please feel free to contact us at any time.

FAQs about the SMA Community's Progress with the SMA Treatment Acceleration Act

Q1: Where do we stand with the SMA Treatment Acceleration Act? How does our pace compare to the previous Congress?

The SMA Treatment Acceleration Act has made good progress thus far in the 111th Congress, which runs from January 2009 - January 2011. The Act was reintroduced in the House of Representatives at the end of April and in the Senate at the end of May following months of discussion between the SMA community and the bill's sponsors, staff for the congressional committees with jurisdiction over health care matters, and federal agency partners.

Thanks to our community's tireless outreach over the past several months since reintroduction, the SMA Treatment Acceleration Act already has gained 57 cosponsors in the House and 15 cosponsors in the Senate, placing us well ahead of our pace in the 110th Congress. (A list of current cosponsors can be found below.) In fact, nearly half of our cosponsors in the House have been added in the five weeks since Congress returned from its August recess, a testament to the power of our community's collective voice and the momentum we have achieve.

Q2: Why have some Members of Congress who previously supported the Act not yet signed on to the newest version?

It is important to understand the current political climate in Washington in order to appreciate the speed with which the Act is gaining support among lawmakers. For most of 2009, health care reform has been an all-consuming process for Members of Congress and their health care staff, largely eclipsing all other health-related measures in Congress. Thus, many of our supporters in Congress have not yet had the time to consider the changes to the bill and express their support. This does not mean that those Members will not cosponsor the legislation, but rather, that an unprecedentedly busy legislative calendar has demanded that all of their time and is focused on the health care reform at this time.

Please know that the calls, letters and e-mails from the SMA community are not being ignored by Members or their staff. In fact, our continued outreach remains integral to the success of this bill as it builds support for the legislation and will make the SMA Treatment Acceleration Act a priority for lawmakers when health care reform is complete.

Q3: What are our next steps? What is the plan for the remainder of 2009 and 2010?

Congress hopes that the health care reform debate will be completed by the end of calendar year 2009. With this massive endeavor out of the way, committee staff and Members who have spent almost the entire year working around the clock on health care reform will be freed up to consider other health-related legislation. All of the SMA community's efforts for the remainder of 2009 will be in preparation to step into this "void" and make real progress later this year once health care reform is completed and in 2010.

Later this year or beginning in January 2010, the congressional committees with jurisdiction over the SMA Treatment Acceleration Act (the House Energy & Commerce Health Subcommittee and the Senate Health, Education, Labor and Pensions (HELP) Committee) are expected to entertain health-related bills with broad, bipartisan support. The SMA Treatment Acceleration Act falls under this broad categorization; however, there are hundreds of such bills and the Committees will likely take up only those bills that are entirely "non-controversial", meaning that every member of the committee is comfortable with the legislation or does not have major objections to its consideration. In order for the SMA Treatment Acceleration Act to be considered in this process, the SMA community must continue to engage lawmakers to educate them about the Act and to build our base of support so that we are prepared to receive Committee consideration when the time comes.

Q4: What can I do to help?

Please continue to engage every Member of Congress in support of the SMA Treatment Acceleration Act by writing and calling your Senators and Representatives. Personalized calls and letters to Members of Congress from the SMA community are the most effective methods of advocating for the SMA Treatment Acceleration Act. In the immediate months, as health care reform continues to dominate the political stage, you should continue to ask friends, family and community members to write letters of support to their Members of Congress encouraging them to cosponsor the legislation. This outreach will lead to more cosponsors and will impact the decision makers on the committees of jurisdiction.

Current Cosponsors:

In the House (57):

Sponsor: Rep. Patrick Kennedy (RI)
Rep. Rodney Alexander (LA)
Rep. Tammy Baldwin (WI)
Rep. Earl Blumenauer (OR)
Rep. Rick Boucher (VA)
Rep. Bruce L. Braley (IA)
Rep. G. K. Butterfield (NC)
Rep. Lois Capps (CA)
Rep. Kathy Castor (FL)
Rep. Yvette D. Clarke (NY)
Rep. Jim Cooper (TN)
Rep. Donna M. Christensen (VI)
Rep. Charles W. Dent (PA)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Barney Frank (MA)
Rep. J. Randy Forbes (VA)
Rep. Jeff Fortenberry (NE)
Rep. Gene Green (TX)
Rep. Bob Goodlatte (VA)
Rep. Bart Gordon (TN)
Rep. John J. Hall (NY)
Rep. Gregg Harper (MS)
Rep. Stephanie Herseth Sandlin (SD)
Rep. Brian Higgins (NY)
Rep. James A. Himes (CT)
Rep. Tim Holden (PA)
Rep. Steve Israel (NY)

Sponsor: Rep. Eric Cantor (VA)
Rep. Walter B. Jones, Jr. (NC)
Rep. Peter T. King (NY)
Rep. James R. Langevin (RI)
Rep. Zoe Lofgren (CA)
Rep. Carolyn B. Maloney (NY)
Rep. Eric J. J. Massa (NY)
Rep. Thaddeus G. McCotter (MI)
Rep. Cathy McMorris Rodgers (WA)
Rep. Mike McIntyre (NC)
Rep. Gregory W. Meeks (NY)
Rep. Tom Price (GA)
Rep. Adam H. Putnam (FL)
Rep. Harold Rogers (KY)
Rep. Steven R. Rothman (NJ)
Rep. Bobby L. Rush (IL)
Rep. Robert C. "Bobby" Scott (VA)
Rep. Joe Sestak (PA)
Rep. Bennie G. Thompson (MS)
Rep. Patrick J. Tiberi (OH)
Rep. Edolphus Towns (NY)
Rep. Debbie Wasserman Schultz (FL)
Rep. Lynn A. Westmoreland (GA)
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):

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. Patty Murray (WA)
Sen. Jack Reed (RI)
Sen. Bernard Sanders (VT)
Sen. Arlen Specter (PA)
Sen. Sheldon Whitehouse (RI)
Sen. Roger F. Wicker (MS)

To download this update, click here.

September 23, 2009

ATTENTION: SMA FAMILIES AND FRIENDS

WE NEED YOU!

Dear Friends and Family of the SMA community,

We hope that your fall is off to a wonderful start so far.

As you know, advocacy efforts are well under way for the SMA Treatment Acceleration Act in the 111th Congress. I know many of you have been hard at work making phone calls, sending emails and letters and recruiting family and friends to support this legislation. Keep up the good work!

As we learned in the last Congress, getting cosponsors for the bill is a process of touch, touch, and touch again. If your Member hasn't yet signed on, don't be discouraged. Just keep on writing, calling, faxing, and making visits to their district offices whenever you get a chance.

We know it's a lot of hard work. We know it can be frustrating. You're all doing such a fantastic job, and we salute you.

We are so proud to be part of this incredible community of advocates and FIGHTERS!

Here are some things you can be doing to ramp up your advocacy efforts and get those Members signed onto the bill!

Check the THOMAS website on Library of Congress (http://thomas.loc.gov) for updated lists of cosponsors (it's updated every day). Just type in "SMA Treatment Acceleration Act" in the search box, and click "COSPONSORS" on the next page for a full list of cosponsors.
Go to www.PetitionToCureSMA.com and sign it! Email your friends and family the link and get them to sign it too!
Click here to "Tweet for a Cure" on Twitter
Keep emailing, calling, and sending letters to your Members. If you need help, call or email Caroline Gibson, Public Affairs Coordinator (carolinegibson@fightsma.com, 804-515-0080)
If you know your Member will be at home for a few days for an event or fundraiser, try and set up a meeting in his or her district offices.
If you're ever in Washington, DC and have time, try and set up meetings with your Member in their Capitol Hill offices
If you have a blog, write about your experience lobbying for the bill and share it with your friends, family, and coworkers!
Most importantly, STAY POSITIVE and KEEP AT IT! All your hard work WILL pay off!!

Thank you all for everything you're doing to fight Spinal Muscular Atrophy.

Warmly,
FightSMA

September 21, 2009

Major Mark Harris, his wife, and son Jonathan (age 4, SMA type III) pose with Senator Richard Burr (R-NC) in his district offices over August recess. Senator Burr, a member of the HELP committee in the Senate, agreed to cosponsor the SMA Treatment Acceleration Act (S 1158).

August 12, 2009 - Thank You to the Co-Sponsors of the SMA Treatment Acceleration Act

FightSMA would like to thank all of the U.S. Representatives and Senators that have signed on to support the SMA Treatment Acceleration Act. Your leadership and dedication to finding a cure for spinal muscular atrophy (SMA) is admirable and appreciated by the thousands of people whose everyday lives are affected by this cruel disease.

Horton Family visits Senator Roger Wicker

Dee Horton and daughter Evie met with Sen. Roger Wicker (R-MS) to thank him for cosponsoring the SMA Treatment Acceleration Act.

As of August 12, 2009, the following Members have signed on as cosponsors of the SMA Treatment Acceleration Act (HR 2149, S 1158):

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

House of Representatives

Sponsor: Rep. Patrick Kennedy (RI)
Rep. Earl Blumenauer (OR)
Rep. Eric Cantor (VA)
Rep. Lois Capps (CA)
Rep. Yvette D. Clarke (NY)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Bob Goodlatte (VA)
Rep. John J. Hall (NY)
Rep. Gregg Harper (MS)
Rep. Stephanie Herseth Sandlin (SD)
Rep. Brian Higgins (NY)
Rep. James A. Himes (CT)
Rep. Steve Israel (NY)
Rep. James R. Langevin (RI)
Rep. Carolyn B. Maloney (NY)

Rep. Eric J. J. Massa (NY)
Rep. Thaddeus G. McCotter (MI)
Rep. Cathy McMorris Rodgers (WA)
Rep. Mike McIntyre (NC)
Rep. Gregory W. Meeks (NY)
Rep. Adam H. Putnam (FL)
Rep. Harold Rogers (KY)
Rep. Joe Sestak (PA)
Rep. Bennie G. 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)

Don't see your Members' name on here? Let them know that you support the SMA Treatment Acceleration Act and they should too! Here's 5 Ways:

Write a letter to your Congressman and Senators expressing your support of the bill. Need help? Click here!
Call your Members of Congress to let them know you support the bill. If you need contact info, call or email Caroline Gibson (804-515-0080, carolinegibson@fightsma.com)
Schedule a meeting with your Members in their district office. Email Caroline Gibson for help (carolinegibson@fightsma.com) Traveling to DC? Make an appointment in their Capitol Hill offices!
On Twitter? In just 30 seconds, you can "tweet" your Members of Congress by "Tweeting for a Cure" at http://www.EndSMA.org/twitter
Sign the PetitionToCureSMA.com. Over 69,000 people (and counting) have already signed!

Thank you for all you are doing to fight SMA!

August 10, 2009 - After a Meeting with Your Congressman or Senators

Thank you for taking the time out of your busy schedules to meet with your Congressman and/or Senators! We appreciate your advocacy and leadership with the SMA Treatment Acceleration Act, as the value of a face-to-face meeting is incomparable.

After your meeting, follow-up is extremely important. Please send a brief recap of your meeting to Caroline Gibson, FightSMA Public Affairs Coordinator (carolinegibson@fightsma.com). Be sure to include the name and email (if applicable) of any staff members that were present in the meeting. Caroline will pass on your notes and work with our government affairs team on the ground in Washington. They will follow-up with the appropriate legislative aide in your Members' Capitol Hill offices.

Another important thing to do after your meeting is to get the word out to other SMA families to let them know that you met with your Member(s). You can "tweet" on Twitter about your meetings, though we do ask you to limit your tweets to the fact that you met with an office and are encouraging others to do the same. Please do not publicly characterize meetings or include staff names or specific statements by Members or staff. A sample "tweet" would be:

I met with my Members of Congress asking them to support the SMA Treatment Acceleration Act. Have you?

You can also append a link to the FightSMA website for more information.

You can update your Facebook status with the message "I Met With My Members of Congress to Support the SMA Treatment Acceleration Act! Get help scheduling a meeting with your Members by clicking here! http://www.fightsma.org/index.php?congressional_info." Again, we request a level of discretion about your private meeting when publicly encouraging your friends, family, and colleagues to meet with their Members on behalf of the bill, too.

If you have any questions at all, please call Caroline Gibson at 804-515-0080 or email at carolinegibson@fightsma.com.

Thank you all for all you do for the fight against SMA!

August 5, 2009 - Grassroots Call to Action

Dear Friends,

We are well under way with our efforts on the SMA Treatment Acceleration Act. As you know, the bill was reintroduced in the 111th Congress in April by our lead sponsors: Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor (R-VA) in the House, and Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in the Senate.

As you are probably well-aware, both houses of Congress have been focused on Health Care Reform over the past several months. The Health Care Reform bills have required a tremendous amount of focus, attention, and effort from our Members of Congress, as well as health staffers, on both sides on the aisle. We have been told by multiple health staffers that they have been inundated with emails, meetings, and health care reform related work that has made it virtually impossible to steer their focus to any other issue at this time.

While we applaud the efforts of our Members of Congress for the incredible amount of care and attention put towards health care reform, it does mean that we, as supporters of the SMA Treatment Acceleration Act, are playing a different "ballgame."

With the arrival of Congress's month long August recess, it is more important than EVER that our Members of Congress hear our voices and turn their attention towards the SMA Treatment Acceleration Act.

Health Staff have said emphatically that it is absolutely imperative that you - friends, family and researchers - set up time to see your Senators and Congressmen at their district offices during the August break. By arranging meetings, sending emails, and making phone calls, you are setting the stage for our Members to, without hesitation, sign on as cosponsors and support this legislation when health care reform is "out the door." We want to be at the TOP of the list of priorities when the Members begin to focus on other issues at hand.

We cannot stress enough the importance of an aggressive grassroots effort over the August recess. It really is up to you, members of the SMA community, to make your voices heard and get your Members of Congress on board as cosponsors of the SMA Treatment Acceleration Act.

You are a mighty army, as evidenced by the enormous, unprecedented success of a single-disease bill in the 110th Congress. Let us continue our efforts, ten-fold! Let's make the 111th Congress, OUR Congress!

As always, FightSMA is here as a resource for you. Should you have any questions or concerns, or would like help setting up meetings in your district offices, our phone lines (as well as email) are always open.

Please feel free to contact me at any time:
804-515-0080
carolinegibson@fightsma.com

Thank you all for everything that you do. We are continually inspired by your heart, dedication, and determination in fighting the good fight.

Warmly,
Caroline Gibson
Public Affairs Coordinator
FightSMA

July 24, 2009 - Grassroots Update

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

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.

June 26, 2009 - Grassroots Update

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help us increase awareness and attention to finding a treatment or cure 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 our grassroots efforts, 17 Members of the House of Representatives and 4 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 during the next two months is 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 July 4th recess which begins next Monday, June 29th is an ideal time for families to arrange meetings with their Senators and Representatives in their state and district offices. District meetings offer a unique opportunity in the middle of Congress's long summer work period 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 Senators and Member of Congress' state and district offices and request to meet with them over the July 4th 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 mount 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: 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 As of June 26, 2009

House of Representatives
Sponsor: Rep. Patrick Kennedy (RI)
Rep. Eric Cantor (VA)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Gregg Harper (MS)
Rep. James R. Langevin (RI)
Rep. Carolyn B. Maloney (NY)
Rep. Thaddeus G. McCotter (MI)
Rep. Cathy McMorris Rodgers (WA)
Rep. Gregory W. Meeks (NY)
Rep. Joe Sestak (PA)
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. 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. Earl Blumenauer (OR)
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. Yvette Clarke (FL)
Rep. Jim Cooper (TN)
Rep. Norman Dicks (WA)
Rep. Anna Eshoo (CA)
Rep. Randy Forbes (VA)
Rep. Bob Goodlatte (VA)
Rep. Bart Gordon (TN)
Rep. Gene Green (TX)
Rep. Ralph Hall (TX)
Rep. Brian Higgins (NY)
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. Mike McIntyre (NC)
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. John Kerry (MA)

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

To download this update, click here.

June 23, 2009 Update

Grassroots efforts and work on Capitol Hill is fully underway to support the SMA Treatment Acceleration Act in the 111th Congress. The SMA community continues its combined collaborative efforts.

Taking advantage of its proximity to Washington, FightSMA visited Capitol Hill June 8th and 9th. Martha Slay, President of FightSMA, and Caroline Gibson, FightSMA Public Affairs Coordinator, traveled to Washington to advocate on behalf of the SMA Treatment Acceleration Act. They were able to meet with a number of health staffers and visited over 35 offices on Capitol Hill. Because of family constituent visits in April, meetings throughout the spring, and this recent trip to Capitol Hill, every Member of key committees has received materials and personal outreach regarding this paramount legislation for Spinal Muscular Atrophy research.

FightSMA and its partners are committed to the success of this first-ever SMA legislation, and plan to return to Capitol Hill throughout the 111th Congress.

June 1, 2009 - National Call to Action

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help increase awareness of Spinal Muscular Atrophy (SMA) and assist in efforts to identify a treatment and cure. With your help, we will find a treatment and cure for SMA!

The SMA Community is very pleased to announce that legislation to enhance federal support for SMA research, H.R. 2149/S. 1158, the "SMA Treatment Acceleration Act of 2009", has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) and in the U.S. Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA). On behalf of our organizations and the families affected by this devastating disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

Today, we are issuing a "Nationwide Call to Action" for all SMA families, researchers and friends to help engage every Member of Congress in support of this legislation and we are asking for your help! PLEASE write your Representative and Senators asking them to sign on as a Cosponsor to the "SMA Treatment Acceleration Act of 2009."

Below is a model letter you can use to send to your Representative and Senators and a few simple steps to assist you in contacting them. Please feel free to personalize your letters or change them as you feel comfortable. While this will take just a few minutes of your time, it will make a great difference!

THANK YOU AGAIN for your help!

Sincerely,

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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

Here are a few simple steps:

Write your letter based on the model letter below. If you are unsure of who your Member of Congress and Senators are please feel free to contact us and we will help you figure that out.
We encourage you to make your letter as personal as possible, feel free to add your personal story or send pictures along with your letter.
Once you have completed your letter, if you have email, please email your letter to your Member of Congress and Senators. Or if you prefer, fax your signed letters to your Member of Congress and Senators. Your Member of Congress and Senators e-mail and fax number can be found on the House of Representatives website www.house.gov or Senate website www.senate.gov. If you send by mail, please note that mail going to the U.S. Capitol is still being screened for anthrax so it often takes weeks to get there. So if you can, please email or fax!
Lastly, let us know when you have sent the letter via email or fax! You can do so by simply adding a cc: to your email to Spencer, Caroline, Annie, or Laura's e-mail or by sending copies of your letters to Spencer, Caroline, Annie or Laura.
As Members of Congress and Senators sign on to be Cosponsors of "The SMA Treatment Acceleration Act 2009", we will send you updates! When you see your Members of Congress and Senators names, you will know that these few minutes have been worth your time! And if you don't see their names, we will ask that you contact them again to remind them of your request!
Remember, you are their constituent and their job is to help address the issues you care most about.

Click here to download the sample letter.
Click here to download the Nation Call to Action as a PDF.

May 22, 2009

We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, S. 1158, the SMA Treatment Acceleration Act of 2009, has been introduced in the Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA). Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) introduced companion legislation, H.R. 2149, in the House on April 28, 2009. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Senators Stabenow and Isakson and Congressmen Kennedy and Cantor for their leadership.

This legislation builds upon the success of the SMA Treatment Acceleration Act introduced in the 110th Congress, which garnered 21 cosponsors in the Senate and 85 cosponsors in the House. The new version of the legislation has been modified slightly to ensure resources for SMA clinical efforts and infrastructure are maximized.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carries the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being affected by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as one of the diseases closest to treatment based on scientists' advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying "back-up" gene that has opened the door to promising new treatment pathways. This research is providing groundbreaking data for SMA and other disorders, including the muscular dystrophies, Lou Gehrig's disease, Friedriech's Ataxia, Fragile X syndrome, and Huntington's disease.

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 Families of SMA, FightSMA, the Muscular Dystrophy Association (MDA) and the SMA Foundation, has united behind the SMA Treatment Acceleration Act of 2009, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, the "SMA Treatment Acceleration Act of 2009" provides for the following:

Federal support for a national clinical trials network for SMA;
Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA;
Establishes an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA; and
Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations are issuing a "Nationwide Call to Action" for all SMA families, researchers, and friends, to help engage every Member of Congress in support of this bill and the great efforts of Senators Stabenow and Isakson and Congressmen Kennedy and Cantor.

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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

Click here to download the Joint Announcement.

April 29, 2009

We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 2149, the "SMA Treatment Acceleration Act of 2009", has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor for their leadership.

This legislation builds upon the success of the SMA Treatment Acceleration Act introduced in the 110th Congress, which garnered 85 cosponsors in the House and 21 in the Senate, including then-Senator Barack Obama. The new version of the legislation has been modified slightly to ensure resources for SMA clinical efforts and infrastructure are maximized.

Specifically, the "SMA Treatment Acceleration Act of 2009" provides for the following:

Federal support for a national clinical trials network for SMA;
Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA;
Establishes an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA; and
Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

Click here to download the Joint Announcement.