By Sara Vigneri

“Have you ever had a problem?”

Patrice Domozych, a tall blonde woman wearing a business suit, poses this question to a group of first and second graders assembled in the Shawnee Elementary School cafeteria in Forks Township. The kids whisper their secret problems to each other as Domozych brings up a colorful Power Point slide showing the book she wrote called Hope is Here to Stay.

“My friend Lauren has a big problem,” Domozych tells the children as they quiet down. “Her problem is that she has a brain tumor.” Lauren is Domozych’s niece and she has been battling Neurofibromatosis Type I tumors since she was nine months old. Now age 13, Lauren has suffered through countless operations and visits to hospitals—she keeps track of each treatment by adding a bead to a long string. Her aunt, feeling helpless while Lauren fought for survival, decided to write a book to tell Lauren’s story and to help raise money for brain tumor research.

Lauren’s prognosis is scary not just because brain tumors are scary, or because cancer treatments are scary, but because of the scarcity of research available to help doctors understand how to treat these tumors. There are roughly 28,000 children living with brain tumors right now, but doctors know surprisingly little about them. Lauren’s family has made it their mission to change that.

In 2004, Lauren’s parents, John and Marianne Loose, decided to raise money for pediatric brain tumor research both in hopes of finding new treatments for their daughter and to help other children diagnosed with brain tumors. John Loose is a football coach at Lafayette, so the family created a one-day football camp with all the proceeds going to their foundation, Lauren’s First and Goal. “We had various football coaches volunteer and 340 kids attended that first camp,” says Marianne Loose. “We raised $20,000 which was way beyond our expectations. Everyone at the camp felt so good about doing something positive.” Today, it’s the largest one-day football camp in the country and they’ve begun offering camps in other states—last year they added one in Florida and this year they will run an additional camp in Ohio. To date they have raised $825,000.

With research money scarce for pediatric brain tumors, places like the Dana Farber Cancer Institute are glad to have this money. “In the 13 years since Lauren’s diagnosis, there hasn’t been one new drug developed,” says Loose. “There’s got to be something better out there and we are willing to invest money to find something.” Scientists at the Dana Farber Cancer Institute are using the money donated by Lauren’s First and Goal to create a tissue bank to research new drug treatments and are also conducting a clinical trial to test the efficacy of a drug called RAD001.

“We also want to spread the awareness about childhood brain tumors, the leading cause of cancer deaths among children,” says Loose. “You can’t just pin all your hopes with a cure, so we need to do a better job of helping patients and families.” In addition to funding research, Lauren’s First and Goal provides monetary assistance to families who are financially devastated by the disease. Earlier this year, the foundation donated $30,000 to sponsor 20 families at Camp Sunshine—a camp for children with life threatening diseases and their families. They also offer money through Lehigh Valley Hospital to help patients bank sperm, an important but often overlooked aspect of cancer treatment.

Meanwhile, back at the Shawnee cafeteria, Domozych tells the children about Lauren’s dreams. She once had a dream that she would meet Orlando Bloom and her dream came true—there are pictures of the two of them on Lauren’s website. “Lauren also had a dream that the kids at Camp Sunshine would have no more brain tumors,” says Domozych. “This is her dream but it did not come true.” Despite this setback, Lauren remains strong and keeps a positive outlook. She has survived countless treatments and suffered every side effect, including losing some of her vision and her teeth. But Lauren soldiers on and is hoping to return to school after a grueling recovery from a stroke. “She’s a really strong girl,” says Loose. “She’s our leader, we all follow her.”

Lauren’s First and Goal Football Camp will be held June 6 at Lafayette College in Easton and June 27 at Otterbein College in Westerville, Ohio. For more information go to laurensfirstandgoal.org. The book Hope is Here to Stay is available at amazon.com.

Sara Vigneri, an experienced health journalist, enjoyed reading Lauren’s movie reviews on www.laurensfirstandgoal.org and is pleased that Lauren can appreciate the merits of a movie like Moonstruck.