Grateful parents battle cystic fibrosis
by supporting research

Although she undergoes daily treatments to clear her lungs, Olivia Tomassetti has not let cystic fibrosis slow her down.

For Lisa and Mauro Tomassetti, supporting the search for a cure and for better treatments for children with cystic fibrosis has a very special meaning: their daughter, Olivia, was diagnosed with the disease shortly after birth. Thanks to the efforts of their Liv For a Cure Foundation, they’ve raised $170,000 to fund research at Children’s Memorial Hospital into the genetic disease.

Cystic fibrosis (CF), which affects 30,000 individuals in the U.S., is a chronic disease affecting the lungs and digestive system. A defective gene causes the body to produce abnormally thick mucous, which clogs the lungs and leads to life-threatening lung infections. It can also affect the body’s ability to break down and absorb food. While treatments are available to manage the disease, there is no cure for CF.

The Cystic Fibrosis Center at Children’s Memorial Hospital, under the leadership of Susanna McColley, MD, head of the Division of Pulmonary Medicine, sees more than 200 children each year. Thanks to generous donors like Liv For a Cure, research into CF is leading to improved treatments. The cystic fibrosis center participates in 20 national clinical trials, which offer patients access to the latest therapies available.

Lisa Tomassetti says she and Mauro knew virtually nothing about CF until Olivia was diagnosed with the disease just hours after birth. Two weeks later, she was transferred to Children’s Memorial, where Lisa and Mauro met McColley for the first time.

“We were very, very scared, because we were afraid we might lose our child,” says Lisa. “Dr. McColley walked into the room and said, ‘I have cleared three hours, and will use every minute of it to talk with you.’ We spent all three hours asking her questions.”

As they began to learn about the disease, the Tomassettis decided that the best way to fight back was to support research into curing and treating CF. They gathered 15 friends and family members, and discussed ways to support McColley’s research through the organization they named in honor of Olivia -- Liv For a Cure. Their first event in 2000 was a family-oriented affair that raised $8,000. “Fundraising was new to us,” says Lisa. “We thought that was a huge amount of money.”

Since its humble beginning, Liv For a Cure has become one of the major supporters of CF research at Children’s Memorial through hosting a number of annual events. These include Liv’s Hunt for a Cure, a goose-calling and waterfowl-hunting weekend each December, which raised $35,000 last year. Upcoming 2009 events include Liv’s Home Run for a Cure, a Cubs rooftop party on May 3; and Liv’s Race for a Cure at Arlington Park racecourse on June 6.

Today, Olivia is an athletic 9-year-old, although she requires treatments several times a day to clear her lungs. The outlook for children like Olivia is encouraging. In the 1950s, few children with CF lived to attend elementary school. Today, thanks to advances in research and medical treatments, many individuals with the disease survive into their 40s and even beyond. To serve the growing numbers of post-teen patients, Children’s Memorial has partnered with Northwestern Memorial Hospital to create an adult CF program to help patients prepare for the transition to an adult medical setting as they reach their late teens. The program will benefit greatly when Ann and Robert H. Lurie Children’s Hospital of Chicago opens in 2012 adjacent to the Northwestern medical campus.

“We’re not raising money for research just for Olivia, but for everyone fighting this disease,” says Lisa. “I’m very hopeful that CF will become a manageable disease like diabetes. Kids like Olivia need to outlive their parents and lead normal lives. That’s my prayer for them.”