When Laura Bonnell, founder and president of the Bonnell Foundation, was 12 years old, she decided to become a reporter. That dream led to a long career at WWJ, the CBS Radio affiliate in Detroit.
One day while doing a United Way promotional piece at the University of Michigan in Ann Arbor, she happened to interview Francis Collins, the world-renowned geneticist who discovered the genetic mutation that causes cystic fibrosis.
“At the time, I was dating my future husband, Joe,” she said. “We had no idea then that we were carriers of that mutation.”
Years later, on Dec. 12, 1994, their daughter, Molly, was born. And thanks to her previous encounter with Collins, Bonnell quickly suspected CF.
“She had a distended stomach, and our dog was constantly licking her because she was salty,” Bonnell told Cystic Fibrosis News Today on the sidelines of an October 2019 conference hosted by the National Organization for Rare Disorders (NORD). “I started researching it and said to my husband, ‘She has CF.’ I called our pediatrician, who told me I was a first-time mom and that I was crazy.”
But Bonnell remembered the Kiss Your Baby campaign from her interview with Collins, and insisted that Molly be tested. The idea behind the public awareness campaign is that kissing a baby and noticing a salty taste can be a way of detecting CF.
“I was on my way to a breaking story when the pediatrician called back,” she said. “I pulled over and answered the phone. She told me, ‘I’m so sorry, your daughter has cystic fibrosis.’ Joe and I cried for one day. We drank a beer on the porch and cried. We were devastated by the news.”
The Detroit-area mom quickly pulled herself together, and launched a CF media awareness campaign on local radio and TV stations. She organized a baseball game between media celebrities and police officers.
Two successful daughters
Less than two years after Molly’s birth, the couple decided they wanted to give their daughter a baby brother or sister.
“There was a one in four chance that our child would be born with CF. I thought, how could that happen twice? My husband wanted six kids, and I wanted four. So we decided on two,” she said. “We rolled the dice, and then Emily was born on June 18, 1997, with CF. We knew right away.”
Compared with Molly, Emily was not healthy at all. Sick with pneumonia almost from birth, she had her first exacerbation at eight months. At one point, during a seventh-grade class trip to Washington, she almost died.
Even so, said Bonnell, “I always told my kids that I would never let my fears rule their lives. In high school, Molly wanted to go to Nicaragua on a mission. It was a life-changing event. She built houses, planted crops and played in the mud — even though her doctor said not to.”
Molly, 25, graduated high school in 2013. As an undergraduate at New York’s Parsons School of Design, she helped create a hospital gown for Care+Wear, and was featured in The New York Times. She’s now in London, pursuing a master’s degree at the University of London’s Central Saint Martin. She has her own website on fashion and design.
Emily, 23, graduated from Michigan State University with an advertising management degree and a minor in Spanish; she recently helped translate for her mother, who assisted a Honduran immigrant with CF.
“My daughters are advocates for themselves and for other people,” Bonnell said. “They have never used their CF to get things. They’d rather not tell anyone than say what’s really going on. People can’t even tell they’re sick.”
Meanwhile, the Bonnell Foundation has given out about $500,000 since its establishment in 2010. Bonnell herself is running it full time; its recent Night of Hope Gala in Livonia, Michigan, attracted 135 people and raised $135,000. Guests included Dylan Mortimer, a Kansas City artist with CF, and Melissa Yeager, the mother of Claire Wineland, who inspired the movie “Five Feet Apart.”
Charity marks 10 years in May
“I have testified at the FDA [U.S. Food and Drug Administration] about the importance of getting medicines quickly to families and approving new drugs,” she said. “I’ve spoken about newborn screening for CF, to get that going in Michigan, and have talked to legislators every year to remind them why we need them to pay attention to CF issues.”
In fact, she said, “I started my foundation because I didn’t feel that anybody was doing anything on a national level to help CF families. Other groups were doing research — which was necessary and fantastic — but families needed financial assistance, medical assistance, lung transplant grants and college scholarships. There was such a financial burden on families, and I knew I could help fill this need.”
To that end, the Bonnell Foundation typically offers medical grants of $500, with recipients eligible to receive such grants twice a year. A lung transplant grant is $3,000, and qualified applicants may receive that up to twice a year as well. In addition, the foundation has given out 225 scholarships — about 20 per year on average.
“I want to get to $1 million because we’d be able to help so many people,” she said. “The need is huge. We get requests for medical assistance multiple times every day. Some people are low-income, or they’re in debt, or something’s not covered — such as a vest — or they need a lung transplant. We can pay a portion of that.”
On May 9, the Bonnell Foundation will celebrate its 10th anniversary with a free private party at Jimmy Choo in Troy, Michigan. Drinks, light hors d’oeuvres, and a DJ will be on hand, with all purchases to benefit the foundation. More information is available here.
Looking back on her CF journey, Bonnell said her life came full circle “because I interviewed Dr. Collins. It was meant to be — and I never forget how lucky we are.”
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