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GI Patient Scores a Strike for Needy Families

Although Allison Levine was raised in Arlington Heights, Illinois, she feels very much at home at the University of Chicago Medicine. At age 11, Levine, AM’05, a pediatric social worker, was diagnosed with Crohn’s disease, an inflammatory bowel disease that can be both painful and debilitating, and sometimes may lead to life-threatening complications.

As a teenager, she transferred care to the University of Chicago Medicine and at that time became one of the youngest patients of Stephen Hanauer, MD, a world leader in the treatment of inflammatory bowel diseases. “I basically grew up there,” she says. “They knew my family and when I became a graduate student there, I went to my appointments by myself and the nurses would always ask about my parents.”

Inspired by the care she received, her experience as a neonatal intensive care social worker, and her involvement as a volunteer social worker for children with Crohn’s, Levine two years ago established the first pediatric gastrointestinal (GI) family support fund at the medical center.

To raise money for the fund, Levine hosts an annual bowl-a-thon, which has generated nearly $35,000 to support bus fare, parking, food, and educational materials for needy families of patients at the University of Chicago Medicine Comer Children’s Hospital.

“So many parents worry about where to get an affordable meal or how to pay for bus fare for weeks on end so they can take care of their child in the hospital. Some parents might even have to quit a job when a child must be hospitalized for a month or more, and then they have trouble paying household expenses like rent or utilities.” she says. “For families who don’t have a lot, the extra help means a great deal.”

Long before Levine established the fund at Chicago, she and her family had been supporting GI research and pediatric programming in various ways, including Levine’s role as a youth ambassador for the Crohn’s and Colitis Foundation of America.

“Right from the beginning this illness has been a part of me,” she says. “I never once thought it was something that needed to be hidden or that I should be ashamed of. But I also don’t feel like it defines me completely either.”

Often, people who suffer from GI diseases don’t talk about it, viewing their condition as embarrassing or inappropriate conversation, but Levine believes no one should have to deal with it on his or her own or only in private. Having endured two surgeries, she recently passed the five-year mark since her last surgery, which for most patients usually means a 50 percent chance of not needing an additional surgery.

“The truth is, you don’t know how badly you felt until you feel better, because it becomes the status quo,” she says. “I remember after I had my first surgery I had so much energy and could eat different foods, and it was a wonderful thing.”

Levine’s goal is to make the pediatric GI family support fund at the University of Chicago Medicine self-sustaining. Ideally she’d like it to grow from the support she currently receives from friends and family to hundreds more people who are also passionate about helping others with the condition.

“I’ve seen how generous people are,” she says. “People I barely know come to the bowl-a-thons and have made very generous donations. I feel so grateful to the University of Chicago for my medical care that I am honored to generate this support for its patients.”

Athlete Inspires Thousands to Give

When it came to swimming, Ted Mullin’s motto was “leave it in the pool.” Mullin, who at 22 died of synovial sarcoma, a rare malignant tumor, was a collegiate athlete whose death has inspired thousands across the country to give toward sarcoma research.

Prior to his death in 2006, his parents, Mary Henry and Rick Mullin, established the Ted Mullin Fund for Pediatric Sarcoma Research, which benefits pediatric sarcoma research at the University of Chicago Medicine’s Comer Children’s Hospital where Ted was treated.

Since its inception, the fund has generated nearly $1 million through various fundraising events including the Hour of Power, an annual swim relay that has grown from 15 teams in its first year to more than 170 teams across the world with 8,300 athletes. Participants engage in continuous relays of any stroke for a full hour of all-out swimming.

“This is a way of honoring Ted’s spirit,” says Mary Henry. “I think he’d be absolutely stunned that so many people are doing something in an effort to raise awareness and funds for this disease.”

The funds have been used for a variety of projects that evaluate the genetic basis of sarcomas, the identification of novel markers of disease diagnosis or progression, and the development of new small molecule and cell therapies for resistant disease. “All of these studies are ongoing, but we anticipate significant advances in the next three to five years,” says John Cunningham, MD, Donald N. Pritzker Professor of Pediatrics and Chair for the Department of Pediatrics.

Each summer, the University also hosts Ted Mullin Scholars, offering four to five Hour of Power participants an opportunity to advance their interest in science and cancer biology.

“Their studies focus on the biology of cancer and blood diseases, which are critical to our identification of new markers that determine diagnosis and predict outcome, as well as characterize novel therapeutic targets,” says Cunningham.

Mullin was just a sophomore at Carleton College when he was diagnosed with the disease that affects 1 percent of cancer patients. Of that 1 percent, 55 percent are between the ages of 15 to 29.

Mullin began swimming competitively in middle school, eventually competing on his high school’s varsity swim team for three years. An honor roll student for eight semesters, he was an Illinois State Scholar and was named an academic All American swimmer his senior year. At Carleton, he majored in history, and was a member of the men’s swimming and diving team and was twice elected captain.

“He was a very good student and had a very strong analytical mind,” adds Rick Mullin. “If the University of Chicago can help create better outcomes for adolescents and young adults with this disease, that would be the most we can hope for.”

Generations of Giving 

Not all of us can do great things. But we can do small things with great love.” The mother of seven routinely demonstrated a love for others by volunteering countless hours of her time, even after she was diagnosed with an aggressive form of brain cancer.

Although Bennett lost her battle to the disease in 2009, her legacy of giving lives on through her children.

To honor their mother, the family established the Bennett Family Pediatric Brain Tumor Fund to benefit the University of Chicago Medicine Comer Children’s Hospital. For the past nine years, the Bennett sisters have hosted the annual Irish Fest and Soda Bread Contest around St. Patrick’s Day raising close to $100,000. This year’s event also honored the late Charles Rubin, MD, for the positive impact he had on UChicago pediatric cancer patients.

“A lot of good people attend the event because they realize it benefits those who need help,” said William Bennett, widow of Lynn Bennett.

Prior to her death, Lynn, who received radiation treatments at the University of Chicago Medicine, organized the first Irish Fest to raise awareness for brain tumor patients. The event, which brings together family and friends, includes Irish step dancers, bagpipers, traditional Irish food, and many children’s activities.

In addition to raising funds at the fest, the sisters also used the Comer Children’s Hope and Healing Network for the second year in a row to generate donations. The online Network allows people to set up fundraising pages to raise gifts for causes dear to their hearts.

Money raised from the Irish Fest aids families of cancer patients who need extra support as they navigate the many challenges associated with caring for a child with cancer. Among the areas targeted include parking and travel assistance and help with food during hospital stays.

“We never left our mom alone when she was in the hospital,” said daughter Karen Peck. “The month before she passed, my parking bill was $600. I could afford the $600, but I know not everyone can. That was the driving force for the fund; to focus on immediate needs and things not covered by insurance.”

During Bennett’s treatment, her daughters said she was always concerned for children fighting their own cancer battles. “She felt bad for kids who were dealing with cancer diagnoses and enduring pain,” said Peck. “When she would go in for an MRI, she would say ‘I’m praying for the kids who are going through this.’”

Peck, who worked as a Child Life Specialist right after she graduated from college at what was then Wyler Children’s Hospital, volunteered her time along with her mother at different hospital events. “We used to have Wyler days where the patients would come back for a big carnival,” said Peck. “My mom used to come down and do face painting and that led her to volunteer at the Ronald McDonald House Charities® of Chicagoland & Northwest Indiana, a partner of Comer Children’s, where she helped make meals for the kids and also helped with their fashion show.”

Added daughter Julie Trafton, “she was always about kids and her grandkids, and she knew that’s where she wanted to focus her time.”

Even in high school, Lynn placed value on people rather than material items, said William. “She volunteered at an orphanage and would spend time holding the children because that was their connection to the outside world,” he said.

Among her other volunteer commitments were the March of Dimes and the Crisis Center of South Suburbia woman’s shelter.

“As kids, that’s all we knew was giving back,” said Peck. “It’s in our blood. They taught us at a young age that when you can, you give back and that there’s always someone fighting a bigger battle than you.”

Already the sisters are busy planning next year’s fest with the hope of reaching even more people. Thinking on what their mother would say about their efforts for pediatric cancer patients, daughter Teresa Capua noted that she would just smile. “She would also say, do more and don’t make it about me. She was very humble.”

To learn more about creating a Hope and Healing Network fundraising page, click here.