Over 50% of children with childhood cancer receive treatments in clinical trials, making them critical for treatment outcomes.
Trish Adkins
Writer, Alex’s Lemonade Stand Foundation
The cough was relentless. Sonia Benjamin sat in her doctor’s office with her mom, hoping for some magic medicine to make the painful hacking stop. She didn’t even think to mention the other ailment that was bothering her — on-and-off debilitating pain in her left ankle — because it seemed totally unrelated.
Sonia, who was just 11 years old, would soon learn that her ankle pain and her cough were connected by Ewing sarcoma, a rare, deadly form of childhood bone cancer. When Ewing sarcoma is found in the lungs at diagnosis, five-year survival rates drop to 50%. Childhood cancer is the number one cause of death by disease in the United States.
Sonia spent a month in the ICU, enduring surgeries and chemotherapy. Tumors were in her right lung, trachea, and left ankle. Frustrated and scared, Sonia’s parents sought a second opinion from Dr. Steven DuBois, a pediatric oncologist at Dana-Farber Cancer Institute (DFCI). Dr. DuBois specializes in the treatment of pediatric sarcoma, and he also co-leads the Center of Excellence grant at DFCI — a multi-year award given by Alex’s Lemonade Stand Foundation (ALSF) to stimulate the development of collaborative clinical trials.
Sonia began a new treatment, but her cancer kept returning. She relapsed in her right lung; then again in her right knee and, unusually, her right big toe. At this point, Sonia, who had been battling Ewing sarcoma for several years, was running out of treatment options. There was one promising trial specifically for relapsed Ewing sarcoma. The trial originated at Children’s Hospital of Philadelphia (CHOP), 300 miles away from Sonia’s home in Massachusetts. Thanks to ALSF’s Center of Excellence grants, it was now open in Boston and available to Sonia.
The critical importance of collaboration
The story of ALSF began in 2000, when founder Alex Scott held a lemonade stand in her front yard, raising $2,000. Alex was battling neuroblastoma and wanted to donate the money to help doctors find cures for all children battling cancer. By the time of her death in 2004, Alex had raised more than $1 million and left a legacy of lemonade stands and collaboration. To date, ALSF has funded more than 1,500 research grants all over North America and Europe.
Each of these projects — whether large multi-year grants or shorter projects that support early career researchers — keeps collaboration as a guiding principle. Through the ALSF network, researchers gather at several in-person and virtual meetings a year, sharing findings, resources, and challenges.
The Center of Excellence grant program, which began in 2013 and supports DFCI, CHOP, Baylor University, and the University of California San Francisco, has helped to increase the total number of pediatric trials available at sites throughout the United States. Approximately 50% of U.S. children with cancer receive treatment through a clinical trial.
For kids like Sonia, having a trial open near her home made a huge impact, allowing her to receive treatment while also attending school.
Moving toward more cures
Today, Sonia’s cancer is stable. She is still on the trial, but it hasn’t stopped her from thriving as a college freshman, something that didn’t seem possible 7 years ago when she was diagnosed.
“When I met Dr. DuBois, that is when my life changed,” said Sonia, who plans on entering the medical research profession after college.
The ALSF Center of Excellence program has helped to fund over 250 ongoing clinical trials each year, giving children with rare cancers, like Sonia, hope and options. Staying true to Alex’s legacy, grants are funded through the generosity of supporters who host lemonade stands, corporate partners who bring ALSF to their businesses, and other donors.
To learn more and get involved, visit www.alexslemonade.org
