Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help us increase awareness and attention to finding a treatment or cure for Spinal Muscular Atrophy (SMA). We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158).

Thanks to our grassroots efforts, 17 Members of the House of Representatives and 4 Senators have now signed on to the SMA legislation. In order to keep this bill moving through the legislative process, we need to continue to grow the number of cosponsors of the bill. Our goal during the next two months is to encourage previous cosponsors from the 110th Congress to sign on to the bill again, while at the same time adding new members to the ranks. A list of our current cosponsors, as well as our target House and Senate cosponsors from the 110th Congress, are provided below. More than ever, we need your help! PLEASE contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.

Additionally, the July 4th recess which begins next Monday, June 29th is an ideal time for families to arrange meetings with their Senators and Representatives in their state and district offices. District meetings offer a unique opportunity in the middle of Congress’s long summer work period to focus Members’ attention on the SMA bill while they are away from the constant demands of their work on healthcare reform and other issues in Washington. PLEASE contact your Senators and Member of Congress’ state and district offices and request to meet with them over the July 4th recess.

As most of you are aware, the SMA Treatment Acceleration Act of 2009, introduced in the U.S. House of Representatives by Congressmen Patrick Kennedy (RI) and Eric Cantor (VA) and in the U.S. Senate by Senators Debbie Stabenow (MI) and Johnny Isakson (GA), provides federal support to complement the substantial private funding that is being invested to find a treatment for SMA. Passage of this landmark legislation will enable scientific investigators to mount national clinical trials and demonstrate that potential treatments are safe and effective for SMA patients.

THANK YOU AGAIN for your help for all those with SMA!

Sincerely,

NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:
Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
Annie Kennedy, MDA, akennedy@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com

111th Congress Co-Sponsors
As of June 26, 2009

House of Representatives

Senate

To download this update, click here

Grassroots efforts and work on Capitol Hill is fully underway to support the SMA Treatment Acceleration Act in the 111th Congress. The SMA community continues its combined collaborative efforts.

Taking advantage of its proximity to Washington, FightSMA visited Capitol Hill June 8th and 9th. Martha Slay, President of FightSMA, and Caroline Gibson, FightSMA Public Affairs Coordinator, traveled to Washington to advocate on behalf of the SMA Treatment Acceleration Act. They were able to meet with a number of health staffers and visited over 35 offices on Capitol Hill. Because of family constituent visits in April, meetings throughout the spring, and this recent trip to Capitol Hill, every Member of key committees has received materials and personal outreach regarding this paramount legislation for Spinal Muscular Atrophy research.

FightSMA and its partners are committed to the success of this first-ever SMA legislation, and plan to return to Capitol Hill throughout the 111th Congress.

Bill and Victoria Strong of Santa Barbara, California dove into the fight against Spinal Muscular Atrophy (SMA) after their daughter Gwendolyn was diagnosed with the most severe form of the disease, type 1. Not only did the Strong Family found the Gwendolyn Strong Foundation to raise awareness and research funding, but they started the Petition to Cure SMA. More than 64,800 people worldwide have signed the petition to show their support for the SMA Treatment Acceleration Act which was re-introduced in both the House of Representatives and the Senate.

The Strongs recently began a new project - turning a family reunion into an opportunity to raise awareness and funding for SMA research. The family will be driving from California to Mississippi, 5,000 miles round trip, so that Gwendolyn can meet her 104 year old great-grandfather. They are asking donors to Sponsor a Mile, with the proceeds going to support the Foundation’s mission.

The Strong’s and their campaign were profiled by Santa Barbara’s KEYT-3 news:

The Palmetto Scoop, a political blog in South Carolina, is reporting that SC Congressman Joe Wilson has signed on as a sponsor of the SMA Treatment Acceleration Act.  That brings the total number of sponsors in the House of Representatives to 16.  The bill would provide federal support to complement the substantial private funding that national non-profit organizations are investing to find a treatment for SMA. Passage of this landmark legislation would enable investigators to mount national clinical trials to demonstrate that identified therapeutics are safe and effective for SMA patients.

To read more about the proposed legislation and to download your own copy, please visit Fight SMA’s spinal muscular atrophy legislative information page.  To read more about Congressman Wilson joining the effort to pass the bill into law, please click here: Wilson sponsors important SMA legislation.

June 1, 2009

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help increase awareness of Spinal Muscular Atrophy (SMA) and assist in efforts to identify a treatment and cure.  With your help, we will find a treatment and cure for SMA!

The SMA Community is very pleased to announce that legislation to enhance federal support for SMA research, H.R. 2149/S. 1158, the “SMA Treatment Acceleration Act of 2009“, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) and in the U.S. Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA).  On behalf of our organizations and the families affected by this devastating disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

Today, we are issuing a “Nationwide Call to Action” for all SMA families, researchers and friends to help engage every Member of Congress in support of this legislation and we are asking for your help!  PLEASE write your Representative and Senators asking them to sign on as a Cosponsor to the “SMA Treatment Acceleration Act of 2009.”

Below is a model letter you can use to send to your Representative and Senators and a few simple steps to assist you in contacting them.  Please feel free to personalize your letters or change them as you feel comfortable.  While this will take just a few minutes of your time, it will make a great difference!

THANK YOU AGAIN for your help!

Sincerely,

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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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

Here are a few simple steps:

1. Write your letter based on the model letter below.  If you are unsure of who your Member of Congress and Senators are please feel free to contact us and we will help you figure that out.
2. We encourage you to make your letter as personal as possible, feel free to add your personal story or send pictures along with your letter.
3. Once you have completed your letter, if you have email, please email your letter to your Member of Congress and Senators.  Or if you prefer, fax your signed letters to your Member of Congress and Senators.  Your Member of Congress and Senators e-mail and fax number can be found on the House of Representatives website www.house.gov or Senate website www.senate.gov.  If you send by mail, please note that mail going to the U.S. Capitol is still being screened for anthrax so it often takes weeks to get there.  So if you can, please email or fax!
4. Lastly, let us know when you have sent the letter via email or fax!  You can do so by simply adding a cc: to your email to Spencer, Caroline, Annie, or Laura’s e-mail or by sending copies of your letters to Spencer, Caroline, Annie or Laura.
5. As Members of Congress and Senators sign on to be Cosponsors of “The SMA Treatment Acceleration Act 2009″, we will send you updates!  When you see your Members of Congress and Senators names, you will know that these few minutes have been worth your time!  And if you don’t see their names, we will ask that you contact them again to remind them of your request!
6. Remember, you are their constituent and their job is to help address the issues you care most about.

Click here to download the sample letter.
Click here to download the Nation Call to Action as a PDF.

Click here for more information on the SMA Treatment Acceleration Act.

Very exciting news today from the U.S. Congress!  The SMA Treatment Acceleration Act of 2009 has been introduced in the U.S. Senate by Senators Debbie Stabenow (D-MI) and Johnny Isakson (R-GA).

Read more on Fight SMA’s Spinal Muscular Atrophy Congressional Information Page!

iParenting.com has chosen Bill Strong as this month’s Dad of the Month. After his daughter Gwendolyn was diagnosed with spinal muscular atrophy at about 6 months of age, Bill and his wife Victoria decided that despite the devastation they felt, they would not sit back idly. The Strongs contacted specialists around the country and began working with a team of doctors at Stanford University. They started a blog to “chronicle their journey with SMA” and are working on an addition website to help other families who receive life changing diagnoses. They have founded The Gwendolyn Strong Foundation to increase awareness of SMA and to fund much needed research. And the Strongs started what they might be best known for: the online Petition to Cure SMA to garner signatures in support of the SMA Treatment Acceleration Act, which was just recently reintroduced in the House of Representatives (H.R. 2149).

FightSMA congratulates Bill on the recognition of his work, and thanks both he and Victoria for all they have done!

Click here to read the full article.

We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 2149, the “SMA Treatment Acceleration Act of 2009“, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA).  On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor for their leadership.

This legislation builds upon the success of the SMA Treatment Acceleration Act introduced in the 110th Congress, which garnered 85 cosponsors in the House and 21 in the Senate, including then-Senator Barack Obama.  The new version of the legislation has been modified slightly to ensure resources for SMA clinical efforts and infrastructure are maximized.

SMA is the number one genetic killer of children under the age of two.  It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and breathing.  Approximately one in 40 people, or approximately 7.5 million Americans, carries the gene mutation that causes SMA.  Each child of two carriers of the mutant gene has a one in four chance of being afflicted by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as one of the diseases closest to treatment based on scientists’ advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups.  Researchers have identified the gene responsible for SMA, as well as a disease modifying “back-up” gene that has opened the door to promising new treatment pathways.  This research is providing groundbreaking data for SMA and other disorders, including the muscular dystrophies, Lou Gehrig’s disease, Friedriech’s Ataxia, Fragile X syndrome, and Huntington’s disease.

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including Families of SMA, FightSMA, the Muscular Dystrophy Association (MDA) and the SMA Foundation, has united behind the SMA Treatment Acceleration Act of 2009, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, the “SMA Treatment Acceleration Act of 2009” provides for the following:

• Federal support for a national clinical trials network for SMA;
• Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA;
• Establishes an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA; and
• Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations are issuing a “Nationwide Call to Action” for all SMA families, researchers, and friends, to help engage every Member of Congress in support of this bill and the great efforts of Congressmen Kennedy and Cantor.

Kenneth Hobby
Families of SMA

Martha Slay
FightSMA

Annie Kennedy
MDA

Cynthia Joyce
SMA Foundation

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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

Click here to download the Joint Announcement.

The Petition to Cure SMA, a list of signatures that will be delivered to the U.S. Congress to indicate support for the SMA Treatment Acceleration Act, reached a massive milestone.  Petition creator Bill Strong posted the following on Facebook today:

Today, nearly 7 months to the day after starting http://www.PetitionToCureSMA.com, we received our 50,000th petition signature in support of the SMA Treatment Acceleration Act!

Thank you John Kramer of Ohio — you are the 50,000th signature. And thank you to all 50,000 people across the world who have supported this effort. You have made a difference!

With your help recruiting new signers we can reach our new goal and get this legislation passed in the 111th Congress.

All the best,

Bill, Victoria, and Gwendolyn Strong
http://www.GwendolynStrong.com (Gwendolyn’s journey blog)

It’s not too late to add your name.  Click the banner below to join the effort!

A big thanks to Bill Strong from PetitionToCureSMA.com for passing along a link where you can vote your approval or disapproval for proposed legislation in the U.S. Congress.  WashingtonWatch has posted the SMA Treatment Acceleration Act, along with many, many other bills.  Please take a moment to go there to vote in favor of this important proposed legislation!

Link to Senate version of the bill
Link to House of Representatives version of the bill

In a related note, Bill says the petition is chugging toward 25,000 signatures.  Make sure your name is included!