Brain tumor fundraising already paying dividends

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RUPERT — As the Be Brave for Life Foundation's third annual Hike-A-Thon readies for a fall morning of outdoor fun and community spirit at Merck Forest and Farmland Center, the money the foundation has raised is funding research that could change the way brain tumors are detected and treated.

"We're focusing on high-impact, high-risk research that will have an impact on the brain tumor world," executive director Laura Callen said Monday.

The Hike-A-Thon is the foundation's signature fundraising event, and it features a number of family activities starting at 9 a.m. on Sunday.

"How many people come out to support this is really amazing," said Be Brave founder Riley Callen, a freshman at Burr and Burton Academy who has been nationally recognized for her philanthropic efforts. "It's awesome to see how many people continue to come out and how many additional people come to the hike."

The foundation's efforts are already paying dividends, as the foundation is helping to fund a pair of research initiatives aimed at improving brain

tumor diagnosis and treatment.

Be Brave For Life has provided more than $100,000 to help fund research being led by Dr. Edward Smith at Boston Children's Hospital to develop a urine test that can help diagnose brain tumors and other vascular diseases in children.

The advantages to urine testing are that it can be conducted at home, is non-invasive and is significantly less expensive than MRI exams. It would not replace MRI or CT scans, but it could help doctors detect brain tumors more quickly and accurately.

Meanwhile, at Barrow Neurological Institute in Phoenix, a team led by Dr. Joseph

Zabramski is investigating the use of an existing medication to help shrink so-called "benign" tumors without surgery. The Be Brave for Life Foundation has contributed $115,000 to this effort.

Laura Callen said foundations such as Be Brave For Life are making a big difference by providing seed money for cutting-edge research that doesn't otherwise attract charitable or grant funding.

"It's foundations like Be Brave For Life that really make a huge difference" in spurring such research, she said. "Bigger funding groups don't want to touch them yet, so our goal is to help bring them forward and advance the research to the point they can apply for funding from the National Institutes of Health."

Raising money to continue those efforts, the Hike-A-Thon will again include three scavenger hunts with varying levels of difficulty, as well as raffles for gift baskets totaling $10,000 in locally-donated goods and services. Food and drinks will be available for purchase and prizes will be awarded.

And you don't have to hike Merck Forest's 30 miles of trails to get something good out of the experience, Laura Callen said.

"It's impossible to be there without feeling the positive energy of the whole community," she said. "Even if you don't hike, please come anyway and participate in the positive energy of the event."

Riley Callen founded Be Brave For Life in 2015 while she was recovering from her third surgery to remove a benign brain tumor from her brain stem. Her efforts in raising money and awareness for benign brain tumors — which can be anything but benign in the way they affect people — led to her being named one of the country's top young philanthropists by the Prudential Spirit of Community Awards this past spring. The effects of the surgeries haven't stopped her from leading an active life, as she made the varsity field hockey team at BBA as a freshman.

On Monday, Riley received more recognition for her work: She was named a recipient of the Gloria Barron Prize for Young Heroes, which annually honors 25 children ages 8 to 18 who have made a significant positive impact on people, their communities, and the environment. The honor includes a $5,000 scholarship.

While much of the focus has been on Riley, her twin sister Hannah and brother Dillon are also a big part of the effort, as are a group of her peers who serve as the foundation's junior board members.

Having peers to help her along the way, spread the word and successfully run events means a lot, Riley said.

"It makes things a lot easier — I'm not the only kid out there," Riley said. "People on the junior board are just really determined and really care about the cause."

"As an adult watching these kids as they become ambassadors it's been really powerful to see how much they grow in confidence — telling people stories, selling raffle tickets, getting sponsors," Laura Callen added. "They're becoming more confident and realizing 'I can do this. I can help make a difference."

Reach Journal editor Greg Sukiennik at 802-490-6000

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