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

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:

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.

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!

From the Delaware County Times in Pennsylvania:

Elizabeth Vandiver never heard of Spinal Muscular Atrophy (SMA) until her sister’s baby, Gwendolyn, was born in October 2007.

Gwendolyn seemed healthy at first. But her mother, Victoria Strong, had a gut feeling something was amiss because of floppiness in Gwendolyn’s legs and neck. Then, at about 9 weeks old, Gwendolyn came down with flu-like symptoms and “crashed,” Victoria said. It happened fast. In the morning, Gwendolyn was smiling. Six hours later, she lay paralyzed in her crib, struggling to breathe.

Doctors initially diagnosed infant botulism. But in the tortuous and test-filled weeks that followed, they discovered Gwendolyn had SMA Type 1, the most severe — and terminal — form of a rare hereditary disease that destroys nerves in the spinal cord. These nerves control voluntary muscle movement, including swallowing and breathing.

The article goes on to describe the family’s battle against SMA by drawing support of the SMA Treatment Acceleration Act through the online petition they created. The SMA Treatment Acceleration Act has been introduced in the House of Representatives and the Senate and is supported by Families of SMA, the SMA Foundation, Fight SMA, and the Muscular Dystrophy Association. The article also includes a discussion of the cause of SMA and the science behind the search for a cure, including comments by FightSMA’s science director, Dr. Chris Lorson.

To read the full article, click here.

Are you one of the thousands and thousands of people who have signed the Petition to Cure SMA?  If not, it’s about time you joined the crowd!  As of this writing, the petition is about 1,500 signatures from reaching the 25,000 mark.  The list of names and comments will be sent to U.S. Congress to show support for the SMA Treatment Acceleration Act, proposed legislation that would be the first ever to authorize funding for research into spinal muscular atrophy.  The legislation was developed and is supported by a coalition of nonprofit groups that includes Fight SMA.

Please add your name to the petition and show your support by clicking the banner below.

A petition created by an SMA family to show the U.S. Congress the support for the SMA Treatment Acceleration Act has hit a big milestone.  Yesterday, the Petition to Cure SMA broke 20,000 signatures.  The petition was created just two months ago by Bill and Victoria Strong.  Their daughter, Gwendolyn, has SMA Type 1.  She turns one year old next month.  Fight SMA has been supporting the petition and the efforts of the Strongs.  Here’s what Bill posted on the Fight SMA Group on Facebook:

With your help, we have attained this milestone and Congress is paying attention. In that short time, 18 new Representatives and 4 new Senators have officially signed on to consponsor the bipartisan SMA Treatment Acceleration Act. We are making real progress…

We started with just a whisper and our voice is growing strong, but we need Congress to hear us from the mountaintops! Please reach back out to your family, friends, friends of friends, and colleagues, and make sure that they and everyone in their household has signed the petition and ask that they do the same with their network. Each and every additional signature shows Congress that this little known disease has a powerful voice!

If you haven’t signed the petition, please click the banner below and add your name to the tens of thousands who have joined in the fight!

The Santa Barbara News-Press published a wonderful story this week about Gwendolyn Strong and the efforts her parents are making to let the world know that it’s time for spinal muscular atrophy to be cured.

Gwendolyn, daughter of Bill and Victoria Strong, was born with SMA Type 1.  She needs a breathing machine, a coughing machine, a sucking machine (to help her swallow) and a wide variety of other devices that keep her alive.  Her parents could have gone into a coccoon, just doing their best to take care of her.  Instead, they decided to fight.  They launched PetitionToCureSMA.com, a petition to show the support for the SMA Treatment Acceleration Act.  The act would take a number of steps to help make it easier for researchers to find a cure for SMA, which is the leading genetic killer of children under two.  The petition has gathered nearly 20,000 signatures as of this writing, and is still growing.  Fight SMA is throwing its enthusiastic support behind the effort.

To read the online version of the story, visit the Santa Barbara News-Press website.  Registration is required to view the entire story.  To download a PDF version of the story, click here.  To sign the petition and indicate your support for the SMA Treatment Acceleration Act, click on the banner below.

Bill and Victoria Strong, the couple behind the Petition to Cure SMA, posted a video on the Fight SMA Facebook Group.  It’s so good it just had to be shared here as well.  If you haven’t joined the Facebook group, head on over and network with us!  If you haven’t signed the petition, please make your voice heard!

We received an update this morning from the organizers of the Petition to Cure SMA.  This online petition was started as a way to show the U.S. Congress that there is public support of the SMA Treatment Acceleration Act.  As this blog post is being written, the petition is about to cross the 6,000 signature mark, and the list is growing fast!  Here’s a look at the top 10 states where signers live:

1. California: 1175
2. Ohio: 379
3. New York: 307
4. Texas: 292
5. Pennsylvania: 269
6. Florida: 262
7. Mississippi: 242
8. Alabama: 225
9. Illinois: 169
10. Georgia: 155

If you haven’t indicated your dedication to curing spinal muscular atrophy by adding your name to the petition, please head over to PetitionToCureSMA.com and sign on!