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.

The Horton Family has known about spinal muscular atrophy (SMA) for less than two years, but they are rapidly becoming strong advocates for SMA families and research - visiting Mississippi’s members of Congress and engaging their community in the fight against the disease. One way that the Horton’s reach out is through newspaper articles, another of which was just published by The Clarion-Ledger, which circulates statewide.

From this article:

Evie Horton, 3, glides across the living room in her wheelchair.

Two years ago, she was a seemingly normal toddler. Her dad, Jeff Horton, recalls thinking, “She’s gonna walk any day now.” But she never did.

So concerned, Horton and wife, Dee, of Flowood took Evie to an orthopedic specialist in March 2008, but tests didn’t reveal any problem.

By April, Evie quit putting weight on her legs altogether. She was referred to a pediatric neurologist, and within a couple of months, was diagnosed with spinal muscular atrophy - a genetic disease that causes muscles to weaken and become useless.

It is the No. 1 genetic cause of death of children 2 and younger and about one in 6,000 infants are born with it.

The article also says:

This past summer, they wanted to do something on a larger scale to help others coping with SMA. Jeff reached out to politicians and received support from Congressmen Gregg Harper and Bennie Thompson, and Sen. Roger Wicker, all of whom co-sponsored the SMA Treatment Acceleration bill. Gov. Haley Barbour declared August Spinal Muscular Atrophy Awareness Month.

Later, with the help of friends, family and co-workers, the couple started the Stop SMA Foundation to raise awareness and fund research, specifically for treatment or drugs nearing FDA approval.

Funds generated may help usher in real hope for SMA patients because experts say a treatment or a cure is possible within five years.

To read the full article, click here.

For information about the SMA Treatment Acceleration Act, click here.

Exceptional Parent Magazine, a publication for families and professionals in the special needs community, recently posted on their website a piece about the 2009 FightSMA Annual Conference that was held in April this year.

The 2009 FightSMA Annual Conference in Review
Sep 24, 2009

During the 2009 FightSMA Annual Conference the energy was actually palpable! Excitement, camaraderie and a renewed sense of determination pulsed through each of us. The large conference room at the L’Enfant Plaza Hotel in Washington, DC hosted a collection of amazingly dedicated people, sharing the same goal and focus: eradicating Spinal Muscular Atrophy (SMA), the number-one genetic killer of children under the age of two.

Advocates from Utah to New Jersey, from Georgia to New Mexico, gather together each year to join forces, share information, and celebrate their important mission. Researchers from across the country and often the world come together year after year to share new discoveries and developments, some even unpublished, with these eager families and friends whose lives have been affected by Spinal Muscular Atrophy. And, every year we march as one to Capitol Hill, sharing with our nation’s leaders the importance of this little-known, but wicked disease.

The 2009 FightSMA Conference was monumental: the SMA community had a bill in Congress for the first time in history, and they had a specific request for each Senator and Congressman, which was to cosponsor this legislation. The bill, the SMA Treatment Acceleration Act (HR 2149, S 1158), is currently in its second Congress and all of our community has been working tirelessly on a grassroots level to get this legislation passed.

To read the full article, click here. Registration required.

Sarah Kennedy had just given birth to her second daughter last December when her 16 month old daughter, Brielle, was diagnosed with spinal muscular atrophy (SMA) type II. Five days after hearing this devastating news, her husband Eric was deployed to Afghanistan with the Army. While they were apart, Eric and Sarah were forced into action to determine how best to care for Brielle and also to deal with the possibility that the new baby, Brooke, may also be affected by the disease. While Eric was deployed, Sarah tackled the heavy work of contacting doctors and therapists and creating a plan for Brielle’s treatment and on top of all that, decided to have Brooke tested. When Brooke also tested positive for SMA type II, she was enrolled in the “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” (or “STOP SMA”) study being conducted by Dr. Kathryn Swoboda at the University of Utah, with funding from FightSMA.

Brielle with Chad Knaus

The extended Kennedy Family became involved with the larger SMA community, participating in fundraisers and contacting their Congressional Representatives about the SMA Treatment Acceleration Act. Sarah’s sister in North Carolina, Christen, introduced her co-workers at Hendrick Motorsports to SMA. After meeting Brielle for the first time at a race in Michigan, (with Christen’s help), Chad Knaus, the crew chief for three-time NASCAR Sprint Cup Champion driver Jimmie Johnson, became interested in this little known disease and asked what he could do to help raise awareness.

Chad started by adding informational links about the disease to his personal website, but recently he has gone a step further. Chad will be sponsoring a hole at the upcoming Jimmie Johnson Foundation Annual Golf Tournament and has chosen to include the FightSMA logo on the sign posted at the sponsored hole. We thank Chad Knaus and the Jimmie Johnson Foundation for including FightSMA and for this wonderful opportunity to raise awareness of SMA.

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).

Over the weekend, the Rankin Ledger ran an article about the Horton Family of Flowood, Mississippi. Jeff and Dee Horton took up the fight against Spinal Muscular Atrophy after their daughter Evie was diagnosed with the disease and as you may know from previous blog posts, they have been leading efforts to gain support from Mississippi’s Senators and Representatives for the SMA Treatment Acceleration Act, visiting Capitol Hill during the 2009 FightSMA Annual Conference in Washington, DC.

In the article, Jeff describes what lead them to become concerned. He said, “At one year, Evie was able to stand, cruise furniture and grab onto fingers of adults….We just weren’t seeing progress in Evie six months later. She wasn’t walking without assistance and seemed scared to walk on her own. The real alarm was when we saw her on the floor, lifting her legs with her hands to move them.” Despite her struggles, Evie is a beautiful, happy little girl who “talks up a storm and loves to sing.”

Click here to read the full article.

On August 27th, FightSMA Southwest/Desiree’s Buddies held the 3rd Annual Spinal Muscular Atrophy Golf Classic at Isleta Eagle Golf Course in Albuquerque. Through events like this, the New Mexico chapter works tirelessly to raise awareness of spinal muscular atrophy (SMA), funding for research, and support for the SMA Treatment Acceleration Act. While preparing for this year’s golf tournament, Desiree’s Buddies’ supporters happened to meet Darren Arnold, the sales manager for KNKT 107.1 FM and KLYT 88.3 FM. Moved by the cause, he helped the chapter produce a commercial which aired multiple times in the days leading up to the golf tournament, and he arranged for Karin Vallo, the chapter president, to be interviewed during a mid-day talk show.

Click here to hear the commercial.

Click here to listen to the interview.

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!