Blog update, new goal

January 31, 2009 by Bill Strong

If you've already signed in support of our petition to end SMA,, you've most likely received the update below that was sent this week by Care2 on our behalf. But, we thought we'd post it here to make sure everyone was updated on the progress of the petition and legislation, what we've done and are continuing to do to help get this bill passed, and our new signature goal of 100,000 signatures.

Thank you again for your continued support. Keep up the good fight!!!


Thank you for signing our petition,, in favor of the bipartisan supported SMA Treatment Acceleration Act. With your help almost 50,000 voices are now speaking on behalf of the many children suffering from Spinal Muscular Atrophy (SMA), the #1 genetic killer of infants. We are extremely proud of this accomplishment and we could not have done it without your help. Your support to further SMA research has given us, as well as other families affected by this horrible disease, the hope that the life of our child will impact the future of so many children to come.

There is much to be excited about for the prospects of this landmark legislation. While it was not passed during the last Congressional session, extraordinary strides were made. At the close of the 110th Congress earlier this month, the SMA Treatment Acceleration Act had 85 cosponsors in the House of Representatives and 21 cosponsors in the Senate, or approximately 20 percent of each legislative body. This represents remarkable progress; comparable bills frequently take years and several Congresses before garnering this level of congressional support.

This year, under new leadership, we are optimistic of the potential for success in the 111th Congress. While many significant hurdles remain and passage is by no means guaranteed, there have been several political events that seem to bode well for significant progress to be made. Additionally, the lead sponsors of the bill remain incredibly devoted and supportive and we already have the support of our new President!

Many people have asked, "What will happen when the 50,000 signature goal is met?" The 50,000 mark has always been an arbitrary number; our main ambition was to reach as many people as possible. The more people who become aware of the devastation SMA causes and the hope that is on the horizon, the faster we will see an end to this cruel disease.

We have not been waiting for the 50,000th signature to take action. Rather, we have been collaborating on a regular basis with the organizations responsible for the SMA bill: Families of SMA, Fight SMA, the SMA Foundation and the Muscular Dystrophy Association. These organizations are working tirelessly to see this landmark legislation passed. We have been giving them regular signature updates from the petition that they can use to more effectively lobby Congress. Presenting an actual, growing list of constituents from the petition in support of the SMA Treatment Acceleration Act has been a powerful tool as they meet with the different legislators. To further assist their efforts and to recognize the remarkable 50,000 signature milestone, at the appropriate time we will be presenting key Members with hardbound copies of all 50,000 signatures!

Your continued support is extremely important to the success of this bill. Grassroots is the single most critical component of any advocacy and education campaign. With your help, we are certain Congress will see the wisdom in pushing SMA research forward.

Researchers have made enormous leaps in the last few years in large thanks to grassroots efforts by families and friends impacted by SMA. And because of their dedication to the cause, SMA is now considered a "model" disease with the potential for enormous benefit to millions of people. So much is known about SMA and by finding a viable treatment and cure for it, the pathway to treatments and cures of many diseases becomes more attainable. In fact, SMA has already had a "collateral" benefit on research into many other diseases, such as: ALS/Lou Gehrig's Disease, Alzheimer's Disease, Parkinson's Disease, Deafness-Dystonia, Duchenne Muscular Dystrophy, Fragile X, Myotonic Dystrophy, Niemann-Pick Disease (NPD), and Tay-Sachs Sandhoff.

We started this petition in July 2008 as a way to do something after being told there was nothing we could do to save our daughter from SMA. This something may not save Gwendolyn, but it has given us hope and eased the feeling of powerlessness. We can do something. We can take action. We can make a difference. By signing this petition, each one of you has made an impact. You have helped get the attention of Congress and you have helped build incredible momentum for this bill. The petition has been a success! Tens of thousands of people are now aware that this under funded disease needs attention.

And because of this petition's success and in honor of the thousands of babies who have lost their fight with SMA and for those continuing to fight for their lives, we are proud to announce an increased goal of 100,000 signatures. 50,000 signatures are excellent, but 100,000 will be exceptional. We cannot meet this goal without you. With your continued outreach efforts for, the tiny voices of the children with SMA will finally sing loudly enough to be heard by Congress. And soon, SMA will be considered a treatable disease ... a curable disease!

"An extraordinarily impressive and successful grassroots effort has been led by the Strong Family Petition To Cure SMA. Government Relations staff in Washington, D.C., regularly draw attention to the Petition to demonstrate to congressional staff the broad and significant level of support for the legislation. The Petition has played a critical role in securing the formal support of many Members of Congress. Having a grassroots tool of this caliber has been indescribably helpful in growing support for the bill. This Petition is a key link in our community efforts to develop a treatment and cure for SMA."
-- Kenneth Hobby, Executive Director, Families of Spinal Muscular Atrophy

"An English idiom states, "actions speak louder than words." It's easy to talk about getting involved and making a difference. How wonderful it is that Bill and Victoria Strong have gotten to work. Inspired by the courage of their infant daughter, Gwendolyn, they've sent this clear and strong message around the world: "Sign your name and help bring an end to SMA. SMA is killing our children." We've seen first-hand the impact this petition has in offices on Capitol Hill. You can talk about constituents, but actually showing the names of the people in a district or state to a Member of Congress or their health staff makes all the difference. The Strong Family Petition to Cure SMA has given our efforts in Washington clout and muscle."
-- Martha Slay, President, Fight SMA

"This petition is critical to our efforts to get Congress to pass the SMA Treatment Acceleration Act. Thank you to the Strong family for leading this effort and to the 46,000+ individuals and families who have joined the cause! Your efforts are making sure our message is heard loud and clear on Capitol Hill Please pass this bill and help make the promise of a treatment for SMA a reality!"
-- Cynthia Joyce, Executive Director, SMA Foundation

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