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Grappling with Brain Tumors

Jon Thomas (left), Founder, Executive Director of Tap Cancer Out and Byron (center) spar for brain cancer in October 2018.

Limbs entangled. Sweat dripped onto the thick fighting mat. A slick wristlock is secured to the roar of cheers and whistles. Competitors Jon and Byron were fighting to raise awareness of cancer. This is the story of how their worlds collided, kicking off a relationship between Tap Cancer Out and the ABTA, resulting in a $100,000 grant to support brain tumor research.

Fighting for a Cause

Ten years ago, Jon attended an award ceremony where attendees were recognized for courageous acts that helped underserved communities thrive. And it dawned on him that, as an ad executive, he wasn’t doing anything worthwhile.

“I was sitting in a room full of people who were doing amazing work, helping people in their communities and around the world. And it dawned on me that I was not doing anything that I could say I was proud of,” said Jon. “I thought about all the people in my life impacted by cancer, and I wanted to create a unique pathway to ending cancer.”

By the end of the awards dinner, the idea of Tap Cancer Out was born and its purpose sketched out on a paper napkin. Tap Cancer Out is a grant-making organization that leverages the art of grappling through Brazilian jiu jitsu fundraising competitions held around the country.

Brazilian jiu jitsu is a subset of Japanese jiu jitsu, focused on submission grappling. 

“It’s basically high school wrestling in pajamas. And you win by points or when your opponent submits and they tap out,” said Jon, founder and CEO of Tap Cancer Out. “Importantly, these competitions are a way to activate and excite the Brazilian jiu jitsu community for a cause.”

Fighting for a Legacy

One member of this martial arts community is Byron, an artist, writer, Brazilian jiu jitsu athlete and a 16-year brain cancer survivor. He is also a partner of the ABTA’s Charitable Shopping program, a volunteer fundraising program for artists and businesses who wish to donate a portion of product sales to support brain tumor research and patient programs.

After the 9/11 terror attacks, Byron answered the call of duty by enlisting in the U.S. military. It was there that Byron was diagnosed with stage 2 oligodendroglioma, a rare brain tumor diagnosed in only three percent of all brain tumors.

His doctors agreed that a wait-and-watch approach would be the way to go for the first several years. But later, Byron underwent two brain surgeries, chemotherapy, 50 rounds of radiation, and participated in a clinical trial to prevent the progression of the brain tumor.

Following the clinical trial, Byron became paralyzed on the left side of his body, forcing him to re-learn everything, including his love for drawing. While managing his brain tumor symptoms, Byron discovered sparring in Brazilian jiu jitsu sparked a deeper connection between his art and life.

“I started training in Brazilian jiu jitsu because I wanted to teach my daughters how to stay safe and be able to protect themselves,” said Byron. “While my daughters were not interested, I found a love for the sport.” 

Byron first got involved with Tap Cancer Out to bridge his love for Brazilian jiu jitsu and his desire to support the fight against brain cancer. He would eventually earn his purple belt and participate in a demonstration match with Jon, the founder of Tap Cancer Out, in September 2018. It was his first and only tournament, but was a major opportunity to shine a light on brain cancer within the Brazilian jiu jitsu community.

“I’m always thinking about what legacy I might leave behind,” confessed Byron. “I didn’t realize I had a bucket list, but I knew I wanted to accomplish things like ensure my family is financially set; that they have a house to call home; to write a book and to help save lives.

It should come as no surprise that Byron has nearly accomplished his bucket list.

Byron earned his Bachelor of Fine Arts in 1997 with a focus on drawing and painting. As an artist, Byron creates larger-than-life thematic charcoal illustrations that capture his life experiences, including his passion for Brazilian jiu jitsu and his journey in fighting brain tumors. He also wrote a book, To the Bone, published on Amazon.com, that peels back the complex layers of his brain tumor journey through poems and illustrations.

“In a way, this book is a love letter to my daughters, teaching them life lessons through my struggles with a brain tumor,” said Byron.

Here he is: prolific artist—check. Brazilian jiu jitsu athlete—check. Author—check. Loving father and family man—double-check. Byron would later cross off the last item on his bucket list—saving lives, with a letter to the ABTA.

Fighting for Change

In December 2019, Tap Cancer Out received a grant application from the ABTA with a personal appeal from Byron. In his letter, Byron urged Jon and his grant team to consider supporting the ABTA’s innovative approach to funding brain tumor research for adults and children.

“When someone who is invested in Tap Cancer Out reaches out and lets us know about an organization with invaluable services and vision, that means a great deal to us,” said Jon, founder of Tap Cancer Out.

Earlier this year, Tap Cancer Out announced that the ABTA was one of its nine cancer-fighting beneficiaries in 2020. The ABTA was awarded a $100,000 grant to support brain tumor research. 

“We’re proud to be able to fund a variety of cancers, such as brain tumors, breast, ovarian, cervical and pediatric cancers this year,” said Jon. “We’re excited to support cancer research as well as other needs of the cancer community, such as respite or adventure trips away from the day-to-day; that’s the focus of Tap Cancer Out.”

“With this ABTA grant, I’m excited that it can help make a difference and possibly save lives,” said Byron.

Making a World of Difference

The enthusiasm and passion of volunteers are the heart of the ABTA. When volunteers engage with the brain tumor community, they not only offer invaluable support, but also gain immeasurable benefits in their own lives.

There are a variety of opportunities to make an impact for the brain tumor community. Consider sharing your time and expertise in the ABTA’s Volunteer program. Contact Volunteer Services at volunteer@abta.org or 773-577-8767 for more information.


 

Make a Difference Today

Your generosity fuels progress. The American Brain Tumor Association has already invested over $35 million in life-changing brain tumor research, leading to breakthroughs like the FDA approval of vorasidenib, a groundbreaking treatment for low-grade glioma. Let’s come together to create more breakthroughs.

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