Young scientists may have passion and brilliant ideas, but unfortunately, they often do not add up to federal funding dollars. This is particularly problematic in pediatric cancer research, which receives just 4 percent of the National Cancer Institute’s $4.95 billion budget.
Enter the Evan’s Victory Against Neuroblastoma Foundation (The EVAN Foundation) into the equation. In 2015, the foundation established the Evan Lindberg Neuroblastoma Research Scholars Program to support exceptional early career scientists at The Children’s Hospital of Philadelphia who are dedicated to finding a cure for neuroblastoma. A rare childhood cancer that 700 new patients are diagnosed with each year in the U.S., neuroblastoma is a tumor of nerve tissue that typically presents in the adrenal gland.
After months of searching for the right candidate, Yael Mossé, MD, a CHOP pediatric oncologist and physician-scientist specializing in neuroblastoma who is leading the new program, announced that the first scholar recipient is Olivia Padovan-Merhar, PhD, a postdoctoral fellow at the CHOP Research Institute. Dr. Padovan-Merhar’s skills and background in computational biology and genomics paired with her interest in medicine and passion for helping others made her an exceptional choice.
“We are thrilled that Olivia is the first beneficiary of the scholar’s program bearing Evan’s name,” said Gavin Lindberg, president of The EVAN Foundation. “Not only is she an incredibly talented scientist, but she is passionate about helping children with neuroblastoma. We are impressed by the contributions she is currently making in the CHOP lab, and even more excited about her potential to become a future leader in the fight against neuroblastoma.”
In 2011, Wendy and Gavin Lindberg established The EVAN Foundation in honor of their son who passed away from neuroblastoma at age 7. During his treatment at CHOP, the family met remarkable researchers who had groundbreaking ideas for treating neuroblastoma, including Dr. Mossé. She shared many of Evan’s qualities: an amazing spirit, curiosity, energy, and compassion.
The Lindbergs realized that engaging more scientists with these traits and cultivating their enthusiasm for neuroblastoma research is essential to finding a cure. Frustrated by the shortage of opportunities for such promising scientists to get financial support from industry or government sources, the Lindbergs made a long-term commitment to help fill the gap in funding for pediatric cancer research.
“When I met Dr. Mossé, I was struck by the fact that she was so young and yet a world-renowned neuroblastoma researcher,” Gavin Lindberg said. “I think that planted a seed in my mind.”
Dr. Padovan-Merhar is thrilled and honored to have received the scholarship. This support will allow her to carry out her current projects and develop as a neuroblastoma researcher, enabling her to better serve the children and parents affected by childhood cancer. She is working with genetic data from families that has been collected over the span of a decade to identify genetic variants that may predispose children to developing neuroblastoma.
As Dr. Mossé demonstrated with the gene ALK, a better understanding of the genetic causes of the disease can lead to improved targeted therapies in the future. In 2010, Evan was one of the first children to receive an experimental drug in a clinical trial that targeted his tumor’s rare ALK mutation. Today, CHOP offers testing for the ALK mutation to children with a diagnosis of neuroblastoma to help customize their treatment approaches.
“We found hope at CHOP,” Wendy Lindberg said. “We had been battling Evan’s neuroblastoma for years, and we were at the point where we had exhausted everything. We always wondered, wouldn’t it be great if there was a personalized medicine approach for Evan’s tumor? Dr. Mossé’s work on the ALK mutation made that possible. Although treatment did not yield the result we were all hoping for in Evan, we knew that we had helped open up a new frontier in the fight against this awful disease.”
In turn, Dr. Mossé and her team learned a great deal from Evan and his courage. They have made significant advances in understanding the role of ALK in the growth of neuroblastoma tumors, and they have developed several treatment strategies that have translated into clinical trials. Evan’s lack of response to the very first ALK inhibitor developed against neuroblastoma has fueled Dr. Mossé’s lab with the drive and perseverance to understand why and to do better for other children.
“The EVAN Foundation Neuroblastoma Research Scholar Program provides an unmatched opportunity to impart this determination and grit to a young investigator, and Olivia is precisely the person to inaugurate this program,” Dr. Mossé said.
To date, The EVAN Foundation has raised $400,000 in support of promising neuroblastoma studies, including several at CHOP. In addition, the Foundation sponsors the weekly “Treats and Treasures Carts” program at their local children’s hospital in Washington, DC. Every Wednesday, the Lindbergs visit each room on the oncology floor at Children’s National Medical Center with two oversized carts full of toys, games, candy, chocolate, stuffed animals, and other fun items. Patients, parents, and siblings all choose as much as they want at no cost. Since the program’s inception, the Lindbergs have made more than 6,000 visits to young children enduring long and difficult stays in the hospital.
Visit the organization’s website to learn more about Evan and the Foundation he inspired.