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.

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!

1. 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.
2. Go to www.PetitionToCureSMA.com and sign it! Email your friends and family the link and get them to sign it too!
3. Click here to “Tweet for a Cure” on Twitter
4. 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)
5. 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.
6. If you’re ever in Washington, DC and have time, try and set up meetings with your Member in their Capitol Hill offices
7. If you have a blog, write about your experience lobbying for the bill and share it with your friends, family, and coworkers!
8. 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

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).

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).

Bill Strong, co-founder of the Gwendolyn Strong Foundation and creator of the Petition to Cure SMA, sent out the following note this week:

This week we hit a very significant milestone —> 70,000 petition signatures! This is an amazing accomplishment and together we have already made a difference in Congress drumming up much needed support for the SMA Treatment Acceleration Act of 2009, but we need more signatures to keep up the pressure and move this legislation forward this session.

Simple ways you can help:

(1) Facebook status —> Update your Facebook status to tell your friends to go to http://PetitionToCureSMA.com and take 30 seconds to sign on in support of legislation currently in Congress, the SMA Treatment Acceleration Act of 2009, that will help end the #1 genetic killer of infants, SMA.

(2) Tweet about it —> Use your Twitter account to get the message out about PetitionToCureSMA.com.

(3) Pass around our public service announcement videos —> Check out the two petition videos that we’ve put together and pass them around to your friends. Our most recent video, “Join The Fight!” http://www.youtube.com/watch?v=DncMkpqn_xo, has received nearly 5,000 views and our first video, PetitionToCureSMA.com http://www.youtube.com/watch?v=U_pL0kMvlcg, has received over 11,000 views.

Thanks so much for your continued support. Together we will unite to continue to make a difference in Congress to see this important legislation passed this session!

All the best,

Bill, Victoria, and Gwendolyn Strong
PetitionToCureSMA.com

As you know, efforts are majorly under way to support the SMA Treatment Acceleration Act (HR 2149, S 1158). Thank you all for the tremendous amount of hard work and dedication you have shown already to getting this bill passed!

Over August recess, there is a full court press to get more cosponsors and we are initiating an aggressive grassroots campaign. The newest grassroots strategy is “Tweet for a Cure” (thanks to the Gwendolyn Strong Foundation). Tweet for a Cure is an example of SMA for SMA (Social Media Advocacy for Spinal Muscular Atrophy). Let’s use this powerful tool to our advantage!

The Strongs have made this so easy for Twitter users out there. From GwendolynStrong.com:

Today, we launched a new EXTREMELY simple way for you to let your Congresspeople know that the “SMA Treatment Act of 2009″ is legislation that is important to pay attention to. “Tweet For A Cure” allows you to automatically Tweet a message to your Representatives and friends based on your ZIP code. Four simple steps. 1-2-3-4…

Here’s how:

1. Go to EndSMA.org/twitter
2. Enter your ZIP code
3. Enter your Twitter username and password
4. Click “Tweet”

That’s it!

Make sure to let your friends know about how easy it was to use EndSMA.org/twitter to sound off to your Congresspeople by Tweeting about it, blogging about it, posting it to your Facebook status, emailing it, etc.

Special thanks must go to our dear friend Josh Lippiner for helping us on this project. It wouldn’t be possible without him. Thanks Josh!

After you’ve done that, be sure to pass along the link to Tweet for a Cure (http://endsma.org/twitter) to your friends, family, and coworkers that are on Twitter!

If you have any questions at all about Tweet for a Cure, please feel free to ask!

Tweet on for 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

A new “Tweet This” button has been added to the Legislative Information page of the FightSMA website. By clicking the button, Twitter users can help get the word out to their followers about the SMA Treatment Acceleration Act by “tweeting” the following message:

I support the SMA Treatment Acceleration Act! Learn more about this important legislation here: http://bit.ly/ihyyl

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 spinal muscular atrophy (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.

Please “tweet” today!

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,

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

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

Senate

To download this update, click here.