IMAGES COURTESY OF MEMBERS OF THE CAROLINE SYMMES CHILDREN’S CANCER ENDOWMENT TEEN BOARD
After losing their daughter, Caroline, to cancer at age five, Libby and David Symmes started an endowment to support pediatric cancer research and improve patient outcomes. Now, the Caroline Symmes Children’s Cancer Endowment is cultivating the next generation of philanthropists.
Every year, dozens of fun runs, lemonade stands, and head-shaving events are organized by families touched by pediatric cancer. Bereaved parents have founded hundreds of nonprofits in the US, with goals ranging from easing financial strain on families to improving outcomes through research. Libby and David Symmes started one such nonprofit, the Caroline Symmes Children’s Cancer Endowment, after their daughter Caroline died from kidney cancer in 2009.
Caroline Symmes was diagnosed with Wilms tumor (the most common type of pediatric renal tumor) just before her fourth birthday and died in 2009 at the tender age of five. Caroline’s doctors told her parents that they didn’t know enough about the genetics of Caroline’s tumor to treat it, as her cancer was resistant to the therapies that cure most Wilms patients. Libby and David’s goal in establishing the Caroline Symmes Children’s Cancer Endowment is “to support cutting-edge research by leading pediatric oncologists around the country as they create targeted drugs, less toxic therapies, and brighter outcomes for critically ill children.” Each year, the Endowment holds a golf tournament, a holiday open house, and an auction. Children’s Oncology Group Foundation has received $325,000 from the Endowment in the last few years because the organization believes COG’s work aligns well with its mission.
In addition to the Endowment’s efforts, they also have a unique Teen Board, which raises $50,000-$100,000 each year. A young man named Joey Mervis proposed the Teen Board after he and his high school classmates raised $20,000 for the Endowment through a lip-syncing video fundraiser. Joey was so inspired by the Symmes family that he asked Libby if he could start a Teen Board.
The first applicants for the Teen Board were Caroline’s friends, which was both heartwarming and heartbreaking for Libby and David. Initially, Teen Board fundraisers went into the Endowment’s general fund. In 2023, the Teen Board took on a new challenge – deciding for themselves where the money they raised would go. In each of the last two years, Children’s Oncology Group Foundation has received one of its two $25,000 grants.
The Teen Board comprises 23 students from ten high schools in Central Indiana. It is led by Joey Mervis’ older brother, Isaac, who recently earned a Master of Public Affairs in Nonprofit Management and Community Development from Indiana University. Students apply for appointment to the Teen Board for varying reasons — a family member’s diagnosis, an interest in science or medicine, or the chance to lead a teen-run organization. Holyn Drook and Shifa Parkar are the current President and Philanthropy Chair for the Teen Board, respectively.
Holyn Drook has been involved in the Caroline Symmes Endowment since 4th grade, when her class raised $95 for a project and donated it to the Endowment. Having served as the Philanthropy Chair last year, she is now the Teen Board President. Holyn described the Teen Board’s signature event, the Day of Hope: “It’s a one-day event but we spend a month planning it. We each come prepared with a spreadsheet of 25+ contacts. For three or four hours, we sit together and call and text and email friends and family. We celebrate each donation by writing the donor’s name on a pink balloon and sending it to the ceiling, like the Caroline Symmes logo. We always take a picture of the ceiling full of balloons, which is really fun. This year we raised almost $50,000 in one day.”
Shifa Parkar serves as this year’s Philanthropy Chair. Shifa and her committee research potential beneficiaries for their Day of Hope fundraiser. “We look at how an organization’s mission aligns with ours, what percent of donations go to research, and what research they’re actually doing. That’s what led us to choose Children’s Oncology Group.” Shifa described funding as the most significant barrier to curing childhood cancer. “We have learned a lot about personalized medicine, tailoring treatment to a person’s biology and their cancer’s biology. That kind of research is hopeful but really expensive, and only 4% of the federal government’s budget goes to research for kids. That’s really daunting.” Holyn added, “We also liked COG because of the breadth of their research. The research they do changes how kids are treated all over the world. And they are looking for ways to reduce symptoms during cancer treatment and ways to make survivors healthier for the rest of their lives. We want to make a difference in the lives of these children throughout their lives.”
Like many former Teen Board members who have gone on to pursue medicine, social work, and healthcare policy, Holyn and Shifa have been changed by their time with the Caroline Symmes Endowment. Holyn plans to pursue neuroscience and business at the University of Michigan next year. “I am a better leader, having led the Board this year. I’ve learned to reach outside my comfort zone to make a bigger impact. In the future, I will be more comfortable approaching leaders, people who know more, so I can learn about the things that are important to me and make a difference for my community,” she said. Shifa, who was drawn to the Teen Board because of her interest in biology, is now planning to major in cell, molecular, and developmental biology at Purdue University. Shifa says, “I discovered an interest in public health and health advocacy from the Teen Board. Fighting for this important cause, raising so much money, … that’s been really powerful. Passion and mission are things I’ll take away with me forever.”
“Joey Mervis started something incredible,” says Caroline’s mom, Libby. “With Isaac’s development over the last 6 years, the Teen Board has become the engine of the endowment. Because of Isaac, the Teen Board isn’t just a club; it’s the start of a movement. Initially, he taught the first groups how to fundraise, but now the Teen Board is self-supporting. The kids empower and train their successors. They chose Children’s Oncology Group themselves. And when they go to college, all over the country, they’re pursuing careers in oncology, social work, and related fields. Our Teen Board alumni are their generation’s newest philanthropists. It’s incredibly humbling and exciting to watch.”