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:

• Edward Markey (MA-7th)
• Rich Boucher (VA-9th)
• Bart Gordon (TN-6th)
• Anna Eshoo (CA-14th)
• Eliot Engel (NY-17th)
• Gene Green (TX-29th)
• Lois Capps (CA-23rd)
• Tammy Baldwin (WI-2nd)
• G.K. Butterfield (NC-1st)
• Charlie Melancon (LA-3rd)
• John Barrow (GA-12th)
• Doris Matsui (CA-5th)
• Donna Christensen (VI)
• Kathy Castor (FL-11th)
• Ralph Hall (TX-4th)
• Fred Upton (MI-6th)
• Joseph Pitts (PA-16th)
• Tim Murphy (PA-18th)

In case you missed it, check out the previous post: “August Grassroots Update.”

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

On Tuesday, April 27th, attendees of the 2010 FightSMA Annual Conference in Washington, DC visited over 70 Congressional offices on behalf of the SMA Treatment Acceleration Act. Families and friends shared information about spinal muscular atrophy (SMA) and the SMA Treatment Acceleration Act (HR 2149, S 1158) with their Congressmen and Senators and encouraged them to cosponsor this historic and paramount legislation.

If you and your family were unable to attend the FightSMA Annual Conference, but would like to advocate for the SMA Treatment Acceleration Act, THIS IS YOUR CHANCE!

Below is a list of Congressional offices that were visited on Tuesday, April 27th. If you recognize your Members’ name(s) on this list, please reach out to them! Thank them for meeting with representatives from your district or state, and reiterate just how important this legislation is to you. Be sure to check THOMAS (http://thomas.loc.gov) to see if your Member is a cosponsor of HR 2149/S 1158. If so, please thank them for cosponsoring, and ask them to reach out to their colleagues to encourage them to cosponsor as well.

If they are not yet a cosponsor, tell them just how important this legislation is to you and ask them to join the growing list of Members of Congress who are in favor of this legislation that will take SMA research over the finish line.

We have indicated whether it was a Member meeting, or fielded by members of the respective Member’s legislative team. If you have any questions, or would like further assistance in contacting your Members of Congress, please contact Caroline Gibson (carolinegibson@fightsma.com, 804-515-0080).

Here’s to seeing the SMA Treatment Acceleration Act cross the finish line!!

House Meetings
Frank Kratovil (MD)- Staff Meeting
John Sarbanes (MD)- Member and Staff Meeting
Kathy Castor (FL)- Member Meeting
Steve Israel (NY)- Staff Meeting
Mike McMahon (NY)- Member Meeting
Yvette Clarke (NY)- Member Meeting
Carolyn Maloney (NY)- Staff Meeting
Elliot Engel (NY)- Member and Staff Meeting
Frank Pallone (NJ)- Staff Meeting
Pat Tiberi (OH)- Member and Staff Meeting
Jim Jordon (OH)- Staff Meeting
Mary Jo Kilroy (OH)- Staff Meeting
Blaine Luetkemeyer (MO)- Member Meeting
Rob Wittman (VA)- Member Meeting
Frank Wolf (VA)- Member Meeting
Glenn Nye (VA)- Member and Staff Meeting
Eric Cantor (VA)- Staff Meeting
Michael Michaud (ME)- Member Meeting
Virginia Foxx (NC)- Member Meeting
Mel Watt (NC)- Staff Meeting
Jan Schakowsky (IL)- Staff Meeting
Daniel Lipinski (IL)- Staff Meeting
Patrick Kennedy (RI)- Member and Staff Meeting
Jim Langevin (RI)- Member and Staff Meeting
Gregg Harper (MS)- Member Meeting
Gene Taylor (MS)- Staff Meeting
Travis Childers (MS)- Staff Meeting
Martin Heinrich (NM)- Staff Meeting
John Shadegg (AZ)- Staff Meeting
Cliff Stearns (FL)- Staff Meeting
Jay Inslee (WA)- Staff Meeting

Senate Meetings
Ben Cardin (MD)- Staff Meeting
Tom Carper (DE)- Staff Meeting
Ted Kaufman (DE)- Staff Meeting
Bill Nelson (FL)- Staff Meeting
George LeMieux (FL)- Staff Meeting
Orrin Hatch (UT)- Staff Meeting
Chuck Schumer (NY)- Staff Meeting
Kirsten Gillibrand (NY)- Staff Meeting
Frank Lautenberg (NJ)- Staff Meeting
Robert Menendez (NJ)- Staff Meeting
George Voinovich (OH)- Staff Meeting
Sherrod Brown (OH)- Staff Meeting
Johnny Isakson (GA)- Staff Meeting
Kit Bond (MO)- Staff Meeting
Mark Warner (VA)- Staff and Member Coffee
Jim Webb (VA)- Staff Meeting
Olympia Snow (ME)- Staff Meeting
Richard Burr (NC)- Member Meeting
Kay Hagan (NC)- Member Meeting
Roland Burris (IL)- Staff Meeting
Richard Durbin (IL)- Staff Meeting
Sheldon Whitehouse (RI)- Member Meeting
Jack Reed (RI)- Member Meeting
Thad Cochran (MS)- Member Meeting
Tom Udall (NM)- Staff Meeting
Jeff Bingaman (NM)- Staff Meeting

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,

*****************

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

For a hard copy of this update, click here.

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 for more information on the SMA Treatment Acceleration Act.

Click here to sign the Petition To Cure SMA.

To contact your Members of Congress, please contact CarolineGibson@FightSMA.com

November 2, 2009

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):

In the Senate (15):

To download this update, click here.

August was an exciting month for the SMA community. Over recess, many Members visited with constituents in their District offices. Many families met with their Members to discuss the SMA Treatment Acceleration Act (HR 2159, S 1158), and many were promised cosponsorship of the bill. SMA families continued to exhibit their hard work, dedication, and incredible advocacy on behalf of this legislation.

In early September 2009, Congressmen and Senators from across the country returned to Washington, DC after the month long August recess, and FightSMA was eager to return to Washington to advocate for the SMA Treatment Acceleration Act. On September 16th, Martha Slay, President, and Caroline Gibson, Public Affairs Coordinator, returned to Capitol Hill to meet with legislative aides to discuss this paramount and history changing legislation.

Slay and Gibson visited over 40 Congressional offices, dropping off information and speaking with health staffers to discuss the new bill and its positive changes, and to request cosponsorship in the 111th Congress. FightSMA is hopeful for an influx of cosponsorship over the next few weeks as a result.

FightSMA plans to return to Washington soon for follow-up visits.

In the meantime, it is imperative for you, families and friends of the SMA community, to continue your grassroots advocacy efforts to your Members of Congress. It is so important for each Member to hear from you, their constituents, and for them to know that this bill is important to you. For help contacting your Members of Congress, please email or call Caroline Gibson, Public Affairs Coordinator (carolinegibson@fightsma.com, 804-515-0080).

Dee Horton and daughter Evie met with Senator Roger Wicker (R-MS) to thank him for cosponsoring the SMA Treatment Acceleration Act (S 1158).

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.

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

House of Representatives

Senate

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:

1. Write a letter to your Congressman and Senators expressing your support of the bill. Need help? Click here!
2. 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)
3. 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!
4. On Twitter? In just 30 seconds, you can “tweet” your Members of Congress by “Tweeting for a Cure” at http://www.EndSMA.org/twitter
5. Sign the PetitionToCureSMA.com. Over 69,000 people (and counting) have already signed!

Thank you for all you are doing to fight SMA!

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!

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