Team Oligo co-captain Brett Johnson continues advocacy to defeat brain tumors

Published October 31, 2019

By JILLIAN STRING

NORTH READING — It was a crisp autumn day on October 20 when North Reading resident Brett Johnson assembled the members of his Team Oligo at Carson Beach in South Boston for the 10th Boston Brain Tumor Walk.

“It was a particularly terrific day. The weather has never been this good. We’ve had years where the freezing rain has come down sideways off the water,” Johnson recalled.

The event was hosted by the National Brain Tumor Society (NBTS), which is the largest nonprofit in the United States dedicated to the brain tumor community.

“The people are such an incredibly caring community of support and love,” Johnson said.

Johnson became involved with the NBTS after being diagnosed with oligodendroglioma, a type of tumor that grows in the brain, in November 2009, after experiencing severe headaches throughout the previous summer.

NORTH READING resident and brain tumor survivor Brett Johnson (crouching center) with the members of Team Oligo who participated in the 10th Boston Brain Tumor Walk on October 20. (Courtesy Photo)

“I looked at (the nurse practitioner) and said, ‘This must be so hard for you to do, to give people information like this.’ It hadn’t really hit me at all,” Johnson said of the moment he was diagnosed.

After two brain surgeries, Johnson reported his tumor has been stable since February 2012.

After he researched multiple brain tumor associations, his neuro oncologist, Dr. Wen, recommended NBTS.

“(Wen) said, ‘I’d go with NBTS. They do more research and advocacy,’” Johnson recalled, adding, “That’s really what it’s proven to be. They’re less the place that you go as a patient looking for information, although they do have that, but they’re much more about research and advocacy.”

According to Johnson, the Brain Tumor Walk began in 2009. He walked for the first time in 2011 and became co-captain of Team Oligo in 2013.

Johnson noted that his team is comprised of people with oligodendroglioma, as well as the friends and family who support them.

“Orange is our color, and the last couple of years we’ve had around 90 people,” Johnson said.

This year, Team Oligo walked in memory of co-captain Tanya Seidel, whose oligodendroglioma returned after 11 years.

A place of daily gratitude

“It was a reminder for me, really, not to ever be complacent, to stay in this place of daily gratitude, which is really what I’m all about. I am so grateful for every day that I have,” Johnson said. “There’s a kind of inexpressible beauty in coming together and remembering someone who’s important to you. Tanya is absolutely present. Her whole family, aunts and uncles, all come to the walk. She is really there.”

Over the past five years, Johnson reported that Team Oligo has raised more than $150,000 for NBTS and brain tumor research.

According to their website, NBTS was created in 2008 when the Boston-based Brain Tumor Society merged with San Francisco-based National Brain Tumor Foundation.

NBTS states its mission as: “We believe we can move the needle faster and drive more new discoveries by influencing and funding research, and actually bringing together policymakers, researchers, clinicians, doctors, and industry organizations to collaborate and share information in order to find better treatments and a cure for brain tumors. We are the only brain tumor organization that has an active public policy agenda, and we directly advocate to policymakers to give brain tumor patients a voice in Washington, D.C.”

Visit braintumor.org or contact Rachel Schultz, Director of Regional Development, New England at rschultz@braintumor.org for more information regarding NBTS research and events.