Susie Rider’s daughter was 18 months old when they saw the first signs of her illness.
Andrea Rider was born with cystic fibrosis, a genetic condition that can affect the lungs, digestive tract and other parts of the body. Historically, few people born with the disease lived long enough to reach adulthood. But by the time Andrea was finally diagnosed, several years later, her mother says it was almost a relief, to finally know what afflicted her daughter, and how to fight it, beginning with medications targeting her most serious symptoms.
“Within a matter of weeks, suddenly I was holding a thriving child in my hands again,” recalls Rider, of Des Moines. “It was that sudden.”
Beginning treatment for her daughter was only the start of Rider’s journey. Andrea was diagnosed in January 2001, and within months, her mother had begun her first letter-writing fundraising campaign, collecting $3,500 from friends and family, her hairdresser and veterinarian.
It was far from her last.
Twenty-five years later, Susie Rider and her Andrea’s Angels team have raised more than $700,000 for the Cystic Fibrosis Foundation, a nonprofit dedicated to developing treatments and a cure for cystic fibrosis. Within a few years, she says, she expects to top $1 million.
Although new drugs — many based on the work of an Iowa medical researcher — have greatly improved the prospects for Andrea and other cystic fibrosis patients, Rider said the fight continues to find treatments for the minority of patients whom the new drugs don’t help, and hopefully to find ways to edit the defective genes that cause cystic fibrosis in the first place.
Andrea’s Angels doesn’t work primarily through major galas or other events. Instead, Rider and her friends and family members are constantly coming up with new fundraising ideas, from the Running With Straws 5K runs to a sponsored monthlong bike ride in which Rider and Andrea took donations to sponsor each day’s segment.
That’s not to say there haven’t been significant single events. In 2019, Rider pledged to shave her head if her team raised more than $50,000. The final total was more than $60,000.
Due to the pandemic, Rider couldn’t host a big event for her head shaving, but she made another fundraiser out of it anyway, sitting with her hairdresser on her front porch and letting people come up one at a time to pledge donations for the right to cut part of her hair.
“And I looked really good bald,” Rider jokes.
There is still no cure for cystic fibrosis. Although new medications have extended the life expectancy of cystic fibrosis patients into their 60s, and Andrea has grown up, graduated from Iowa State University, gotten married and begun her career as a jeweler, Rider says her battle against the disease that nearly killed her daughter is far from over.
That’s because fundraising against cystic fibrosis, and seeing the huge strides that have been made just in her daughter’s lifetime, are what fill her with hope.
“Hopeful, I’m cautiously hopeful,” she said of her decades of fundraising efforts. “I used to feel constant fear. The opposite of hope is fear, and living in fear is a terrible thing. I never want to live in constant fear again.”
William Morris writes for the Des Moines Register. He can be contacted at wrmorris2@registermedia.com or 715-573-8166.
This article originally appeared on Des Moines Register: Des Moines mother turns fear into $700K for cystic fibrosis research
Reporting by William Morris, Des Moines Register / Des Moines Register
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By William Morris, Des Moines Register | USA TODAY Network
