Students run

Brie Dragonattie, assistant principal of Notre Dame Preparatory, is flanked by Radia Wong, left, and Lillian Mueller, a member of the student-run nonprofit Students Supporting Brain Tumor Research.

(Special to GSN)

The statistics are alarming. Within the next 12 months, over 200,000 people in the U.S. will be diagnosed with a primary or metastatic brain tumor.

Brain tumors are now the leading cause of solid tumor cancer deaths in children through high-school age and the second-leading cause of cancer deaths in young adults ages 20 to 39.

Even benign brain tumors. Due to their location, they are difficult to treat and often severely compromise the quality of life. The cure rate for most brain tumors is significantly lower than that for most other types of cancer.

Amid these gloomy statistics, a non-profit was started in Arizona in 2002 to raise funds for brain tumor research.

It was founded shortly after three students from the Paradise Valley School District were diagnosed with brain tumors and ultimately died. Students Supporting Brain Tumor Research is the largest student-run non-profit in Arizona. So far, it has raised over $3.7 million.

The organization provides opportunities for students to work with managers of large companies, do media interviews, talk with researchers and observe live brain surgery.

Ayush Kothari, who just graduated from BASIS Mesa and is the current co-chair for SSBTR, already has plans to extend the organization’s reach to other states.

He joined the group three years ago, explaining that it was disturbing enough “to hear about statistics and what demographics brain tumors affect and how they disproportionately impact the youth population.”

But when Ayush talked to a survivor, he decided to join SSBTR and applied to become an ambassador.

“Having that connection with the person who was a survivor and hearing about their journey, the emotions, brought an incredibly personal touch which statistics themselves weren’t able to provide,” Ayush said. “Just hearing that story is what made me want to become involved in the organization.”

Ayush recently talked to a doctor researching Diffuse Intrinsic Pontine Glioma, a fatal condition in children with a zero survival rate.

“It’s not curable,” he explained. “Current treatments improve quality of life but they can’t extend life itself. It’s an incredibly complex disease but we’re making steps to combating it and creating a treatment plan that can help these children recover. And being able to help contribute towards that is very fulfilling.”

He said the organization has two main goals.

“One is increasing awareness about brain tumors and the second is raising funds,” Kothari explained. “To accomplish these two goals, first, we get researchers to talk with us. We hear directly from researchers and they can talk to us about different areas they’re working with and what research is being done with the funds that SSBTR has provided.

“We hear cutting-edge research from phenomenal institutes like Barrow Neurological Institute, T-Gen, the National Brain Tumor Society, and Phoenix Children’s Hospital, and University of Arizona Medical Research,” he continued.

“From these different areas, we can see what SSBTR’s tangible impact is. That helps increase awareness among the people we’re reaching out to.”

He noted that 93% of every dollar raised goes directly to these institutions to fund brain tumor research.

“Second, for raising funds, we have ambassadors conducting their own fundraisers where they have their own events to increase awareness and response,” Kothari said.

“At a “cur-a-thon” event earlier this year at Saguaro High School in Scottsdale, the group raised $22,000.

Radia Wong, a newly minted Notre Dame Preparatory graduate, has been involved in SSBTR since her freshman year and is also a student co-chair.

“We help lead the meetings and we organize our fundraisers so that we can help raise money for SSBTR to donate to brain tumor research organizations,” she said.

She knows a lot of people at SSBTR who’ve been impacted by brain tumors and said, “I’ve met a lot of these wonderful people who have lost their children, brothers or sisters to brain tumors.”

Radia is also an advocate for the National Brain Tumor Society, talking and lobbying congressional representatives and senators and their offices.

“I also try working with other volunteers who are doctors and relatives of people who’ve passed away from brain tumors. We’re all working together to try and persuade the congressional officials to help pass legislation to increase funding for brain tumor research and also to help patients and caregivers.”

As she heads off to college, Radia wants to continue with the organization.

“SSBTR helped me develop my interests in the brain and how humans think,” adding she’s considering a career in brain research.

“My advice to others thinking of joining is SSBTR is it’s a wonderful cause where volunteers, students and adults, are passionate and inspired to make a difference to help improve patient’s lives,” she said.

“We are a team working through establishing and bringing together everyone’s different ideas and strengths to create these wonderful events.”

She said the group is expanding this year, starting at lower grade levels such as elementary and middle school and going into universities.

“We’re a growing organization and we’d love for other people to get involved,” added Ayush. “And the more people that are involved the closer we get to finding a cure.”

Information: ssbtr.org or admin@ssbtr.org