On June 20th, Joshua’s Buddies, FightSMA’s chapter in Troy, Michigan, held its 10th Annual 5K Run/Walk/Roll to raise funds for Spinal Muscular Atrophy (SMA) research. Despite concerns about rain, crowds turned out to show their support of the fight against SMA – the #1 genetic killer of children under the age of two.
Thank you to the Cueter family (pictured below) and all their supporters for 10 great years!
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) |
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) |
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Patrick’s Buddies’ 3rd Annual Rubber Duck Race was a tremendous success! Held Sunday, June 7, 2009 at Mindowaskin Park in Westfield, NJ, the race is estimated to have raised between $13,000 and $14,000 for spinal muscular atrophy (SMA) research. According to Maureen Higgins, head of the New Jersey chapter of FightSMA, the generosity shown by their supporters is extremely impressive given the charities in their area have been suffering during the economic downturn.
Recognition must be given to the employees of PTC Therapeutics for their tremendous support. Headquartered in South Plainfield, NJ, they had a “gaggleometer” in the office to tally their donations, which reached close to $1,000 from the individual employees! One of the PTC scientists who works on SMA, Amal Dakka, attended the event and helped Patrick give the signal to dump the ducks in the water at the start line. Maureen said, “I was very excited to have their support. It’s great that our supporters can see an actual scientists who benefits from this crazy duck race we throw every year!”
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.
Update to posting “Driving to cure spinal muscular atrophy“:
Newspapers and press outlets across the country have picked up on the story of the Strong’s journey. Even the Associate Press ran an article. Check out some of the news pieces by visiting The Gwendolyn Strong Foundation press page
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