In The Spotlight
Blake Leyers can’t remember a time when CF wasn’t part of her life.
She doesn’t have the fatal genetic disease, but her younger brother, Andy, did. He lost his battle with CF when he was 26. Losing her brother was the hardest thing Blake has ever lived through.
Today, she says the 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 help the Foundation move its mission forward. I don’t want anyone to lose another son, brother, parent or friend to this terrible disease.”
Sharing Stories to Create Change
For Blake, supporting the mission of the Cystic Fibrosis Foundation is about sharing her connection to the disease and helping others find their own connection to CF.
Blake speaks openly and honestly about Andy, his life, and his struggles on her blog, and has led many successful social-media based fundraising campaigns in his honor. But her most important contribution to the CF cause is her work as state advocacy co-chair for the Tennessee Chapter.
She shares the role with 2014 Alex Award winner Marissa Benchea. Together, they raise awareness about CF and the challenges families affected by the disease face with politicians at local and national levels.
“We help put a face on this disease by sharing our stories,” Blake said. “We have a story of hope, and it’s a privilege to be able to tell our elected officials about the breakthroughs being made by the CF Foundation.”
Making a Difference
At the national level, she helped get legislation passed making 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, adding that advocacy is her way of carrying on her brother’s legacy. “Andy always believed this disease would be cured. He didn’t get to live to see the cure, but I’m hoping I will.”