Blake Leyers can't remember a time when CF wasn't part of her life.
Although she doesn't have the fatal genetic disease, her younger brother, Andy, did. His battle with CF ended when he was just 26. Losing her brother was the hardest thing Blake has ever lived through, and that loss has made her more determined than ever to help find a cure.
“My brother has passed on, but my fight is not over,” Blake said. “I am going to do everything I can to make it so that no one has to lose another son, brother, parent, or friend to this terrible disease.”
Sharing Stories to Create Change
For Blake, this means motivating others to get involved by helping them find their own connection to the disease. As state advocacy co-chair for the CF Foundation's Tennessee Chapter, Blake speaks openly and honestly about Andy, his life, and his struggles.
“I'm able to help put a face on this disease by sharing Andy's story,” Blake said. “Although his story is one of loss, now more than ever, the story of cystic fibrosis is one of hope. It's a privilege to be able to tell our elected officials about the breakthroughs in research, care, and drug development and what they can do to help support people like Andy.”
It's a strategy that's worked.
Blake uses her role as a CF advocate to carry on the legacy of her late brother, Andy. “Andy always believed this disease would be cured. He didn’t get to live to see the cure, but I’m hoping I will,” Blake said.
A meeting Blake helped facilitate between medical professionals and state leaders led to better medical coverage for people with CF in Tennessee. At the national level, she helped get legislation passed that makes it easier for people with rare diseases to participate in clinical trials without losing eligibility for public health care benefits.
“Seeing legislation we advocated for become law is evidence that our voices really do make a difference,” Blake said. “Andy always believed this disease would be cured. He didn't get to live to see the cure, but I'm hoping I will.”