When parents of children recently diagnosed with cystic fibrosis contact Stacy Motenko to talk about the disease and what they can expect, Stacy turns uncertainty into hope by sharing her own experiences.
Stacy Motenko, who has CF, lives life to the fullest and believes in helping others. For the last 13 years, Stacy has given the Bid for a Cure speech at the Orange County Office – Southern California Chapter’s annual Breath of Life Gala, and has raised more than $1.5 million for CF research and drug development.
“I tell parents there’s every reason to believe that someone born today with CF will live a very normal life. The advances I’ve seen in my lifetime are incredible,” she said. “There will be tough times, but with lots of love and support, a child with CF can do anything.”
Stacy would know.
Diagnosed at birth with CF, she grew up fighting bronchitis, stomach aches, ulcers and hernias. She had 10 sinus surgeries by the time she was 18 and often missed two days of school each week. But Stacy never let her disease stop or define her.
Living Life to the Fullest
She graduated with honors from the University of California at Santa Barbara with a degree in communications. During her college career, she studied abroad in Australia, where she swam with sharks and even jumped out of an airplane.
“I live life to the fullest, and I love doing adventurous things, so going away to school was really important in my development,” Stacy said. “I learned how to take care of myself and how to be independent.”
It was a lesson she learned the hard way. Stacy spent her first night in Australia in the hospital because of complications with her disease. Though she was half a world away from home, she pushed through the fear to follow her dreams.
Stacy never lets CF hold her back. While living in Australia, she swam with sharks, jumped out of an airplane and went bungee jumping.
“My parents suggested that I come home on the next plane, but I told them I was staying,” Stacy recalls. “I forced myself to stay there and carry out my plan to live abroad. Had I just gone home, I would have missed out on a lot of incredible learning opportunities.”
Not only did Stacy complete the six-month semester abroad program, but she went back to Australia a few years later. During her second visit to the country, she went bungee jumping to celebrate her 25th birthday — a birthday she never thought she’d see.
Ambassador to the CF Community
Today, Stacy is back in California where her to-do list is just as long as ever. She hopes to one day pursue a master’s degree, get married and continue traveling the world. But if there’s one thing in life Stacy wants to accomplish more than any other, it’s to help people.
Stacy currently works as a pharmacy patient advocate where she helps people with CF get access to the healthcare and treatments they need. Each spring she also leads a Great Strides team named in memory of her good friend and mentor Leslie Petrone.
But it’s at an annual speaking engagement where her true spirit shines through. For the last 13 years, Stacy has given the Bid for a Cure speech at the Orange County Office – Southern California Chapter’s annual Breath of Life Gala.
Stacy, pictured here with Robert J. Beall, Ph.D., president and CEO of the CF Foundation, received the Alex Award in 2012. Given annually by Frank Deford, chair emeritus of the CF Foundation Board of Trustees, the award recognizes someone with CF who acts as an inspiration to others.
Families affected by cystic fibrosis and friends of the Foundation come back year after year to hear Stacy’s incredible story. To date, Stacy’s speeches have raised more than $1.5 million for CF research and care and have caused many to see her as an ambassador to the CF community.
Her courageous appetite for life and incredible spirit have earned Stacy many accolades, including the prestigious Alex Award. Given annually by Frank Deford, chair emeritus of the CF Foundation Board of Trustees, in honor of his daughter Alex, the award recognizes someone with CF whose life is an inspiration to others.
“Stacy represents the CF community with her own success story and the way she connects to people with cystic fibrosis,” Frank said in a video greeting at the 2013 Cystic Fibrosis Foundation’s Volunteer Leadership Conference. “I always want people who win this award to have done the things I think Alex could have done had she lived a longer life. Stacy certainly lives up to that standard.”
For Stacy, life is about helping others.
“Giving back and helping other people has really become my mission in life,” Stacy said. “My definition of success is making a positive impact on the world — and that’s the reason behind everything I do.”