PLANT CITY — Shawn Santos has a simple explanation for her mission to raise awareness of spinal muscular atrophy, a rare genetic disease.
“We need to find a cure for our babies,” she said.
Santos’ 6-year-old daughter, Brooklynn, was diagnosed with the disease as an infant, and Santos has become an advocate for a group that raises money for research.
Accompanied by her husband of 13 years, Jayson, she visited Washington, D.C., this summer with other members of the Greater Florida Chapter of Families of Spinal Muscular Atrophy to lobby for federal research funding. She met with U.S. Rep. Dennis Ross and representatives of U.S. Sens. Bill Nelson and Marco Rubio during her visit.
The 40-year-old Plant City resident also convinced the city to declare August as awareness month for the disease.
Santos said she takes the lead in trying to garner support for the cause, including advocating for quick federal approval of promising drugs, because of her husband’s work schedule.
The disease is the leading genetic killer of children under the age of 2 and has no known cure. The disease, which progressively weakens muscles and saps strength, is similar to Lou Gehrig’s disease.
Audra Butler, who is president of the chapter, said Santos has had a wealth of ideas for new fundraisers and rejuvenating old ones.
“She is a creative force behind what we are doing. If somebody has an idea, she is the one who runs with it,” said Butler, a Land O’ Lakes resident whose son, Andy, died from the disease when he was 20 weeks old. “She’s definitely been a big part of everything that we do.”
The chapter with 350 members has raised almost $300,000 for research in recent years. One of its biggest fundraisers is an annual awareness walk that has generated $100,000 since it was founded in 2009.
The next Walk-N-Roll is Nov. 15 in Lakeland, and the chapter is lining up sponsors and participants. Butler hopes that 350 walkers take part, including some children in wheelchairs.
She set a goal of $20,000.
Santos has helped spearhead the walk, which will be in Lakeland for the first time.
Santos and Butler offer similar thoughts on their efforts on behalf of the organization.
“I made a commitment to Andy that when he breathed his last that I’d continue to carry the message,” Butler said.
Santos said she won’t stop doing her part to save lives.
“I have to do it and I want to do it until we find a cure,” she said. “I don’t want to lose any more of our wonderful children.”
(813) 394-5103 Twitter: @dnicholsonTBO