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On an overcast May day, Rich P. stood on the steps of the U.S. Capitol, surrounded by hundreds of fellow brain tumor advocates. They had come from across the country for the National Brain Tumor Society’s annual Head to the Hill event, ready to meet with members of Congress and speak out about the urgent, unmet needs of the brain tumor community.
Nearly 20 years earlier, Rich had been in a very different place — sitting in a primary care doctor’s office just days before his honeymoon, hearing the words no 24-year-old expects: “You have a brain tumor. Wait for the neurosurgeon to call. Go home and write your will.”
A wave of disbelief and fear hit him. Instead of enjoying a Mediterranean cruise with his wife Sarah, Rich underwent surgery a week later. When he woke up, his vision was doubled, one object appearing on top of the other.
“We got the pathology back, and it looked as good as possible,” Rich recalled. His neuro-oncologist recommended a “watch and wait” approach, holding off on radiation and keeping a close eye on the remaining astrocytoma tumor with periodic scans.
At the time, Rich assumed recovery would be straightforward.
“I figured once I was healed up, I’d be good to go,” Rich said. “I was so naive. I didn’t know at the time how much it would impact my everyday life.”
Managing Medication
Since his diagnosis in 2005, Rich has faced the persistent challenge of managing his antiseizure medications, which bring their own set of complications.
“Over the years, it’s been tough,” Rich said. “I was on the medication Keppra, and it was great. All of a sudden, my mood went flat, and I lost 20 pounds. The doctor felt it was the medicine, so he switched it up. I felt way better and was on that ‘new’ medicine for 6-7 years. It was great until it wasn’t.”
Side effects from a new medication made basic tasks difficult. “I remember crying to my wife that I couldn’t add two plus two,” Rich said. “Another one made it hard to swallow.”
The unpredictability of these effects weighs on Rich and his family.
“That’s the hardest part for my kids,” he said. “It’s never been simple. It’s always right there.”
Family Connections
Rich’s uncle Arny
Before his own diagnosis, Rich had only heard about brain tumors in stories about his grandfather Harry, who passed away from one in 1961.
But in the years that followed Rich’s surgery, brain tumors struck his family again. His cousin Ruthie died in 2013, and in 2017, his uncle Arny passed away from glioblastoma after a rapid decline.
“That was maybe harder for me than my own diagnosis,” Rich said. “I was very close to him. My kids saw him go downhill quickly. He had been an executive VP of sales at a big company, and he could talk to anyone. But as the treatment went on, his speech became slurred and labored. It was difficult for him.”
Supporting NBTS
Years later, while driving with his oldest daughter, she asked Rich, “Am I going to get a brain tumor?” Her question cut deep. It also solidified his commitment to doing everything he could to ensure a better future for his family.
“The reason the National Brain Tumor Society has always been a given for me is because, statistically, the tumor will come back,” Rich said. “When it does, I need to be able to say to myself that I did everything I could to make sure I’m OK for my family.”
National Brain Tumor Ride
Rich’s involvement with NBTS began with the National Brain Tumor Ride in Massachusetts, then known as the Ride for Research. He joined the ride at the invitation of the rabbi at his parents’ synagogue, whose daughter had died from a brain tumor. Rich rode alongside his aunts and uncles in memory of his grandfather Harry.
Nearly two decades later, Rich is still part of the ride, now serving as its emcee.
“We remain involved with NBTS because of the way people connect and show a passion,” he said. “We’re all rowing in the same direction. I couldn’t ask for a better organization to be connected with.”
Running the Boston Marathon
In 2023, Rich decided to run the Boston Marathon with NBTS’s Gray Nation Endurance® team. It was a lifelong goal made more urgent by his family history.
“I live about a block and a half from Heartbreak Hill,” Rich said. “Every year, I’d watch the Boston Marathon and think, ‘I want to run this race.’ I was 43 at the time, and my grandfather died at 44. He missed a lifetime. I told myself I had to do it before I turned 44.”
He trained every day on Heartbreak Hill, thinking of the three family members he had lost to brain tumors.
“When I hit the hill that day, it was like I was coming home,” Rich shared. “Crossing the finish line, I wasn’t thinking about myself. I was thinking about them. They were with me every step of the way.”
Rich ran in their memory while fueling the breakthroughs ahead.
“I run because there’s really no other option,” he said. “Running with Gray Nation Endurance gives me a chance to not only be part of this wonderful community but also raise much-needed funds for research.”
Advocating with NBTS
Rich first learned about NBTS’s advocacy work through his involvement with the National Brain Tumor Ride, and he felt compelled to do more in addition to fundraising.
“Advocacy has a different feel than fundraising,” Rich said. “You leave these meetings saying, ‘I just helped to push the agenda that could potentially raise millions of dollars.’”
BRAIN Act
At Head to the Hill this spring, Rich and his fellow brain tumor advocates urged members of Congress to co-sponsor the Bolstering Research And Innovation Now (BRAIN) Act — bipartisan legislation developed and tailored specifically to the unique needs of the brain tumor community.
“This disease isn’t rare [to me],” Rich said. “It’s the number one cancer killer of children. I’m one of four people in my family to have had a brain tumor. There’s nothing rare about that.”
Harry with his kids, including Rich’s mom
For Rich, the BRAIN Act is long overdue.
“It’s important to let everybody know that this legislation is necessary,” Rich said. “It’s vital. My treatment was very similar to the treatment my grandfather had in 1961. That’s unacceptable. We need to do better. Because if we don’t, someone in 2061 will be having the same treatment as my grandfather did in 1961, and that’s just not fair to our kids and their kids.”
Rich credited Representative Jake Auchincloss for supporting the bill.
“I couldn’t ask for a better member of Congress to support me, my family, and our community,” Rich said. “He’s been incredible.”
Advocacy Matters
Rich believes advocacy is effective because it’s personal, and that’s why participating in events like Head to the Hill and Advocate From Your State can make a difference.
“These people on the Hill, they’re human,” Rich said. “We may see them on TV, but they need to hear what it’s like to live with a brain tumor, lose a family member, or be a care partner for somebody.”
He recalled one meeting with a young congressional staffer who was newly married. “By the time we finished speaking, he was in tears,” Rich said. “Our stories resonate with people.”
Rich encourages others to get involved in advocacy, no matter their experience level.
“It’s way less intimidating than you think,” Rich shared. “You’re not sitting in a congressional hearing getting peppered with questions. You’re just telling your story. These people are just regular people. They want to hear from you — that’s their job. You’ll feel great about yourself when you’re done.”
“I remember walking into that first meeting feeling nervous about saying the wrong thing,” Rich said. “I was surrounded by brilliant scientists, and half the time I didn’t fully understand what they were saying. But then the chair turned to me and said, ‘Your voice is important here.’”
In these meetings, Rich shared insights from a patient’s perspective about what a treatment might feel like, not just how it looks on paper.
“They see things from their angle, I see things from mine, and somewhere in the middle is the right vantage point,” Rich said. “It gave me a sense of hope that things can change and get better.”
Connect with NBTS
“My greatest goal is to have my kids call me just Dad — not their dad with a brain tumor,” Rich said. “So the more work that I put into it, the closer we get to that, and hopefully one day it can be true.”
Like Rich, you can take action to make a difference for yourself, for your loved ones, and for the entire brain tumor community. Whether you join Gray Nation Endurance, attend a local event, or raise your voice as an advocate, you can create meaningful change.
“Finding a cure, obviously, is the ultimate goal, because it’s personal,” Rich said. “We have to live day to day. The team at NBTS allows me and my family to do that. It would be impossible without you guys.”
