In a heartwarming moment during Wednesday’s business session, MDA Ambassador Natalie Olson – who is among the first to be treated for spinal muscular atrophy (SMA) with Spinraza, the first-ever FDA-approved therapy for SMA in 2016 – told delegates, “Thank you fire fighters for being who you are. Happy 100th anniversary.”
After just one dose, Natalie saw immediate improvement, and after several doses was able to realize her goal to walk down the aisle at her 6th grade graduation two years ago.
Diagnosed when she was just two years old, Natalie’s father, Dan Olson, said, “We felt like our lives were on fire,” but credited MDA for its tremendous support and encouragement and thanking IAFF members for their part in raising funds to make the research possible to develop drugs like Spinraza that are giving hope to families like his.
“Thank you – each and every one of you – for standing outside, whatever the weather, advocating for our family. You are putting out the flames and bringing us hope. You’re changing lives, You’ve forever changed ours.”