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.

On October 19th, the St. Petersburg Times ran an article about Trevor Smith and Laurie Elliot of the Tampa Bay chapter of FightSMA. Both Trevor and Laurie have urged Florida’s congressional representatives to support the SMA Treatment Acceleration Act.

From the article “Parents issue urgent plea to politicos”:

Thank God for the box of tissues. Trevor Smith couldn’t control her tears.

It could have been nerves. She was in Washington, D.C., without her husband or daughter for the first time.

Or maybe it was the gravity of what she had to tell C.W. Bill Young, the Bill Young, senior legislator known for getting the job done on Capitol Hill, face to face.

There was Trevor - 39-year-old wife of T.A. Smith, part-time sales rep for Kelly Services staffing agency and the mother of 6-year-old Joie - in a big, “stately looking” office.

She told Young about her daughter and about the disease that Trevor had never heard of until doctors diagnosed Joie. Spinal muscular atrophy, SMA for short, is the leading genetic killer of babies, according to the international nonprofit organization called Fight SMA.

On the Hill that day in April, dozens of regular people active in Fight SMA met with legislators or their aides. Laurie Elliott, whose 11-year-old daughter has the disease, had traveled from Hyde Park to sit across from Tampa’s own Rep. Kathy Castor.

They wanted to tell the people with political strength about an incurable disease that can lead to muscle weakness in children. They wanted to tell them that researchers think they can make a difference if they get more money for clinical trials and such.

To read the entire article, click here.

The Charlotte Observer on May 6, 2007 ran an article about the Bolton Family who started FightSMA’s North Carolina chapter, Eleanor and Jack’s Buddies, in honor of their two children who have spinal muscular atrophy. John and Holly Bolton attended the FightSMA Annual Conference in Washington D.C. in April where they visited the offices of their representatives on Capitol Hill, including North Carolina’s Representative Sue Myrick.

From the article:

Their mission: Help kids in broken bodies
Couple back from Washington, where they sought U.S. funding to treat neuromuscular disorder
JOE MARUSAK

HUNTERSVILLE — Everyone told John and Holly Bolton not to worry, toddler Eleanor would walk soon enough. She didn’t.Eleanor, now 4, has spinal muscular atrophy, the Boltons learned.

The incurable disorder kills more infants than any other genetic disease. Son, Jack, 2, also inherited the responsible mutated gene. Many kids can still live a long life, but many don’t. “Fifty percent don’t live past age 2,” John Bolton said.

The disease affects kids’ ability to walk; only a few can stand up. It impairs their breathing, forcing them onto breathing machines. In more severe forms, lungs quit or fatal pneumonia invades.

The Boltons returned from Washington last week, where they and other parents lobbied for the proposed SMA Treatment Acceleration Act.

The legislation would establish a national clinical trials network to develop safe and effective treatments for SMA patients and possibly lead to a cure for the disorder that strikes as many as one in 6,000 infants.

“It’s so close,” John Bolton said. “If we had parity in funding from government, it would be a done deal.”

To read the full article, click here.

After opening with a cocktail reception the night before, the FightSMA Annual Conference hosted a full day of researcher presentations on Monday at the L’Enfant Plaza Hotel in Washington, D.C. FightSMA Science Director Dr. Christian Lorson kicked off the day at 8 o’clock in the morning with a review of the basic science of spinal muscular atrophy (SMA). This was followed by eleven scientists who represented the United States, Canada, Germany, Italy, the National Institutes of Health, university researchers, and private sector biotechnology corporations. With the contributions of the additional scientists and researchers in the audience, this diverse group openly discussed published and unpublished research, recent successes and failures, and novel tactics in the fight against SMA. The energy of the room was evident as the attendees looked towards the second day of presentations on Tuesday.

FightSMA’s annual conference, “The Good Fight” is set for April 22-27, 2007 in Washington, D.C. at the L’Enfant Plaza Hotel. We are looking forward to seeing old friends from around the world and to presentations by more than 30 spinal muscular atrophy scientists and clinicians. We especially appreciate the generous sponsorships of the meetings provided by PTC Therapeutics, Oxford Biomedica, and Genzyme. For more details, click here.