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

Greetings SMA families, researchers and friends:

We would like to extend our deepest thanks for your dedication and all you have done to help grow support for the SMA Treatment Acceleration Act (H.R. 3334/S. 2042). Thanks to your efforts, 83 Members of the House of Representatives and 21 Senators have signed on to the bill, a major milestone for the first-ever federal legislation authorizing SMA funding.

Our approach and goals for the rest of this year are to continue to push for consideration of the bill. Congress is likely to recess for the fall election season as early as this week, but, there is a possibility that a “lame duck” session will occur following the November elections and before the new Congress and President are sworn into office. If Congress does return for a lame duck session, it is possible that the SMA Treatment Acceleration Act could be considered. As part of an effort to create such an opportunity, our government relations team is in ongoing discussions with Congressional leadership and senior members of the House Energy and Commerce Committee on both sides of the aisle.

Regardless of the outcome of a lame duck session, we have made extraordinary progress over the past 12 months which positions us perfectly to reintroduce the bill at the start of the new Congress next January, continue to grow support, and work towards passage and enactment. Thank you again for your continued hard work as we make progress in securing support for our Act. As we continue our discussions with Congressional leaders in the coming months, we will provide additional updates as well as calls to action to seek your help in moving key decision makers in the House and Senate.

Sincerely,

Martha Slay, FightSMA

Kenneth Hobby, Families of SMA

Cynthia Joyce, SMA Foundation

NOTE: If you have any questions about the SMA Treatment Acceleration Act, please feel free to contact any one of our Government Affairs staff: Laura Breiteneicher of the SMA Foundation (laurab@wswdc.com / 202-589-0800), Spencer Perlman of Families of SMA (spencer@fsma.org / 202-333-5750), or Caroline Gibson of Fight SMA (carolinegibson@fightsma.com / 804-515-0080)

Victoria and Bill Strong describe their daughter Gwendolyn as “a bright, happy little girl with a fighting spirit.” That spirit serves her well as she battles type 1 spinal muscular atrophy. To advance the fight against this terrible disease, the Strong family began a letter writing campaign and then created a petition to show members of Congress the support that exists for the SMA Treatment Acceleration Act.

From the Strong Family’s call to action:

PLEASE SIGN THIS PETITION TO HELP CURE SPINAL MUSCULAR ATROPHY, THE #1 GENETIC KILLER OF CHILDREN UNDER THE AGE OF 2.

We need your help to move landmark legislation through Congress that will allocate federal resources to non-profit and research organizations focused on finding a treatment and/or cure for SMA.

• SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
• SMA is the #1 genetic killer of children under the age of 2.
• SMA is estimated to occur in nearly 1 out of every 6,000 births.
• The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million American.
• There is currently no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
• Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

Our precious daughter, Gwendolyn (http://www.GwendolynStrong.com), was born perfectly healthy in October 2007 and diagnosed with SMA at the age of 6 months. SMA is a degenerative disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, breathing, head and neck control, and even swallowing. Gwendolyn has Type 1 SMA, which is the most aggressive, terminal form of the disease. Gwendolyn’s mind, heart, and spirit are no different from any other baby, but her body is failing her. We will most likely lose our little girl to this disease before she reaches the age of 2.

Gwendolyn is one of thousands of children coping with this devastating disease. In fact, 600 new babies will be born in the United States with SMA this year alone. The good news is hope is on the horizon. The National Institute of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders and researchers estimate that we are as close as only a few years away from finding a treatment and/or cure for SMA. However, funding is needed to make that last and crucial leap. THAT’S WHERE WE NEED YOUR HELP!!!

For the first time, legislation has been proposed in the United States Congress to allocate federal resources to non-profit and research organizations focused solely on finding a treatment and/or cure for SMA. The SMA Treatment Acceleration Act (H.R. 3334/S. 2042) was introduced in the House of Representatives as H.R. 3334 by Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor (R-VA) and in the Senate as S. 2042 by Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in August 2007 and September 2007, respectively. This legislation is supported by Families of SMA, the SMA Foundation, Fight SMA, and the Muscular Dystrophy Association. The passage of this legislation could change the lives of thousands of children and give them the future they so deserve….

As you know, legislation like this will only move through Congress with broad support and Members are significantly more likely to cosponsor and support legislation if their constituents are actively urging them to lobby for support of the bill on their behalf. Thus, to help move this legislation through the process WE NEED YOUR HELP IN SIGNING THIS PETITION to make sure your Senators and district Representatives know that this is an important piece of legislation to cosponsor.

To add your name to the petition, click here. For more information about the SMA Treatment Acceleration Act and other ways you can get involved, click here.

The year 2007 has been successful for the SMA community on Capitol Hill, most notably with the introduction of the SMA Treatment Acceleration Act in both the U.S. House of Representatives and U.S. Senate. This legislation (H.R. 3334/S. 2042) would provide increased federal support for spinal muscular atrophy (SMA) research and would strengthen a nationwide clinical trials network focused on approval of treatments for SMA. On behalf of our organizations and government relations teams, we are extremely grateful to the many individuals who have reached out to their Members of Congress to gain support for this important legislation. The list of cosponsors is growing each week! As it stands today, 30 Members of the House of Representatives and 10 Senators have signed on. Click here to see the current list. This is a very good early showing of support for this legislation and we are confident the ranks of supporters will grow even more in the New Year.

Again, our heartfelt thanks to each of you who have joined our efforts to advance the cause of SMA in Washington.

Below is a new article written for Fight SMA and FighterMom. Some material in this article comes from the FighterMom Manual.

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You CAN Make Things Happen in Washington for Your Cause

Fight SMA, the organization my husband and I founded in 1991, is an international nonprofit organization working toward a cure for spinal muscular atrophy (SMA). We haven’t always been a big organization, however. As with all grassroots efforts, we started small and had a lot to learn.

When we launched Fight SMA we knew we had to work hard to get the federal government to increase funding for spinal muscular atrophy. We met with our congressional representatives and with the head of the relevant institute within the massive National Institutes of Health. We received useful insights and nice photographs for our newsletters, but failed to increase the small NIH budget for spinal muscular atrophy research.

Our fortunes changed, however, as we gained experience. Our latest successes involve the SMA Treatment Acceleration Act, proposed legislation that was recently introduced for consideration in the U.S. House and Senate. The bill was created by a coalition of SMA groups that includes the organizations Families of SMA, the SMA Foundation, and Fight SMA.

Below is a list of the some of the things we’ve learned. Donna Mullins of Washington, D.C. public affairs group Winning Strategies and Steve Eichenauer of Public Strategies Washington provided these tips. Hopefully they will help you have more success the FIRST time you solicit the federal government for your cause.

The Power of Partnerships

Our first successes with Congress came when we “threw in” with other SMA organizations that had taken on Washington as a strategic priority. As part of a coalition, we were harder to ignore, and thus started seeing real results. Research what other organizations are already doing to raise funds or awareness for your cause and, if possible, partner with them. Be sure, however, that your goals are one in the same.

Additionally, when scheduling appointments with a representative, it’s best to book a group of visitors. A “pack” of constituents may be more likely to get face-to-face time with a representative.

How to “Attack the Government” from Multiple Fronts

While it’s an excellent idea to travel to Washington, you can also bring your representative to you. Contact the home district office and invite him or her to an event you’re sponsoring. Engagement at home, when they’re working to impress voters, can be a great way to get their attention.

Know What You Want

This can be one of the hardest things to figure out. Some representatives are willing to take up the cause of raising awareness and work toward more funding for a cause. Others believe that the scientific community should drive funding decisions. Additionally, many elected representatives fear that taking up one cause will open themselves up to criticism from constituents who are pushing other causes. As a guide, find out what they have done on behalf of others. Make it a goal to get at least as much for your cause.

What To Avoid

It is important to know what your congressional representative can or cannot do. For example, members of Congress cannot dictate where the NIH spends money. However, they can draw attention to the concerns of a constituent and raise questions about the level of funding.

Make the Most of Your Time

When you sit down for your “Big Washington Meeting”, tell your representative what you think the government SHOULD be doing, and ask directly for their assistance. This is not the time to be bashful.

Don’t be surprised if your representative doesn’t show up for your meeting, and don’t underestimate the role of the staffer who is there. That person may be your regular point of contact, so build a relationship with them.

Cut to the Chase

Finally, when you do sit down with your elected representative or his/her staffer, start talking right away about what you want. Legislators and their staff are very busy, so this is not a time to be long winded. When you present your case, be sure to relate it back to his or her home district. Some statistics about how your cause affects their home state or district can be extremely effective.

Bring Materials

Create a one-page document to give your representative or his/her staffer during your visit. The document should be bulleted and easy-to-read, and include all of the important information about your cause, including contact information for you or your organization.

Don’t be Afraid to Follow Up

On any given day in Washington, members of Congress have about 20 different people visiting with them and seeking assistance. After your meeting, be persistent. Phone or write to remind your representative what was discussed and what was promised.

While following this plan doesn’t guarantee success, not having a plan will nearly guarantee failure. Good luck in your efforts.

To learn more about the SMA Treatment Acceleration Act, visit the Fight SMA website. You can also listen to episode three of Fighting Back Podcast, a program produced by Fight SMA and FighterMom, to hear Martha Slay discuss recent Fight SMA congressional visits.