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!

A big thanks to Rozie McClay for posting the long version of the Invisible Heroes video in the “submit your news” section of the KOMO-TV website.  Here’s a link to see it yourself.  We encourage you to spread our videos anywhere you find an appropriate place!

No doubt you’ve noticed the addition of Facebook logos in the sidebar of this blog and on the front page of Fight SMA.  The Fight SMA Facebook Group has about 180 members as of this writing, and is growing fast.  If you’re a user of Facebook, please head over and join the group to network with others who are fighting with you!

Link: Fight SMA on Facebook

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!

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.