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Come together to raise nationwide awareness about glioblastoma (GBM), the most common, complex, treatment-resistant, and deadliest type of brain cancer.
Jennifer L. fondly remembers the long road trips she took as a child with her mom, Jacqueline. With a car stocked full of CDs and the open road ahead of them, they’d belt out lyrics, make spontaneous pit stops, and have uninterrupted conversations that stretched for miles.
“Road trips were our one-on-one time without any real distractions,” Jennifer said. “Neither of us could walk away from a conversation, so even if something uncomfortable came up, we had to follow through. It wasn’t always pretty, but I always valued that time between us two.”
Those long car rides helped shape the deep bond between mother and daughter, which became even more important as Jacqueline faced a brain tumor diagnosis.
When Everything Changed
At 11 years old, Jennifer witnessed her mother having a seizure on their living room couch.
“I didn’t know what was happening since I didn’t know what a seizure was,” Jennifer recalled. “I thought my mom was dying on the couch.”
An ambulance rushed Jacqueline to the local hospital, which quickly transferred her to another hospital better equipped to handle neurological cases. There, they learned she had a low-grade astrocytoma, resulting in two surgeries about one year apart.
Jennifer said, “I remember feeling uncertain at the time, wondering, ‘Is this an annual thing? How often do we do this?’ Even at a young age, I could see the staples in her head and how she couldn’t drive or work for a while. I didn’t understand everything she was going through, but I could tell how much it disrupted her life. That’s when I started asking more questions.”
Growing Up Fast
Even in middle school, Jennifer found herself stepping into a caregiving role. She hadn’t yet taken a basic anatomy class, but suddenly she was trying to interpret medical jargon for her family.
Jennifer said, “I noticed that when a doctor would come in and say something to us, we would all just nod along, but then once the doctor left the room, we would say, ‘What does that mean? Can you look this up?’ At an early age, I found myself in a caregiving role and took on the note-taking and asking clarifying questions. It felt like a really heavy lift to be the one who understood what was going on and translate it for other people.”
By the time Jennifer had her driver’s license, she was the one taking her mom to medical appointments. Later, even after moving out of state, she coordinated her visits around her mom’s treatment schedule. On the days her mother took oral chemotherapy and her stepdad was at work, Jennifer made sure she was there, ready with nausea meds, a blanket, or anything her mom might need.
“We did what we needed to do to get through to the next moment, but we didn’t have conversations about the long-term impact,” Jennifer said.
On days when her mom was feeling better, Jennifer would pop in over lunch break to check on her.
“I didn’t want her to feel like I was hovering and treating her like a child,” Jennifer said. “I tried to give her some space and freedom because she was always a very independent person.”
Quality of Life
Over 15 years, Jennifer helped her mom navigate a brain tumor diagnosis that eventually recurred as glioblastoma in 2020. Each surgery brought new challenges.
“After surgery, she would lose things like her peripheral vision, her ability to drive, her memory, even her ability to communicate,” Jennifer said. “Each time, she lost a little more of what made her feel independent.”
Near the end of Jacqueline’s life, after she stopped taking her medication and transitioned to hospice care, the changes became even more profound.
“There came a point where I’d walk into her room and have to introduce myself,” Jennifer recalled. “If I didn’t, she would be standoffish. But once that recognition clicked in, it was like a switch flipped.”
Jacqueline entered hospice care in early July 2021. The COVID-19 pandemic limited access to some resources, but they were able to get a hospital bed with an incline for her home and support from a visiting nurse twice a week for basic care. In her final weeks, Jacqueline was moved to Jennifer’s cousin’s home, where the caregiving responsibilities could be shared.
“Having other people around made a huge difference,” Jennifer said. “We were able to set up shifts to manage her medications, some of which had to be given every four hours.”
Jacqueline passed away later that month.
“In terms of self-care, I didn’t practice it enough,” Jennifer admitted. “But I did take caregiver leave from work, which was very helpful because it was not manageable trying to work when she was asleep. I was on leave for a few weeks until she passed, and then gave myself another month before returning to work.”
From Grief to Advocacy
Although Jennifer had known about the National Brain Tumor Society (NBTS) since her mother’s glioblastoma diagnosis, she didn’t have the bandwidth to engage. Between college, multiple jobs, and caregiving responsibilities, event participation had to wait.
“It can be a really lonely journey,” Jennifer said. “It was 15 years of all these little things piling up, and I was looking for connection. Through NBTS, I’ve found such a profound sense of community. Having that shared unique experience with others has been helpful for me in my healing and grieving journey.”
Jennifer made the decision to travel to Washington, D.C., to attend Head to the Hill® for the first time in 2023.
“In hindsight, it was a bold choice to go by myself,” Jennifer said. “But it felt right. I finally had the emotional bandwidth to dedicate to something that mattered deeply to me. And from the moment I arrived, I didn’t feel alone.”
She encourages others, especially fellow introverts, not to be intimidated.
“There’s such a warmth in the NBTS community,” she said. “Extroverts will help bring you in, and the way the event is structured really sets you up for success. You get a full day of prep, you meet the other advocates from your state, and you learn how the meetings will run.”
Jennifer shared that the most important part is simply being willing to share your story.
“It’s hard to keep retelling or reliving it, but the empathy and kindness you’re met with takes some of that emotional burden off,” Jennifer said. “Our stories are valuable, and they matter.”
She continued, “We’re all out here having these deeply personal experiences and making memories with the people we love. NBTS’s Head to the Hill and Advocate From Your State events give you the space and the platform to talk about what matters and what we’d like to see done about it.”
Advocating for the BRAIN Act
Brain tumor advocates from Rhode Island and NBTS CEO & President, David Arons (far right), met with Senator Jack Reed (third from left) at the 2023 Head to the Hill.
During her first Head to the Hill, Jennifer had the opportunity to meet Senator Jack Reed.
“It was such a powerful moment,” Jennifer said. “He joined our meeting in person, and he’s been a pretty big champion in the cancer research space. It made me feel like our stories and our voices were being heard.”
Today, Jennifer advocates for the bipartisan Bolstering Research And Innovation Now (BRAIN) Act, groundbreaking legislation that addresses the spectrum of challenges facing the brain tumor community, from basic scientific research, to early-phase drug discovery and development, clinical trials, diagnosis and treatment planning, and care and quality of life for those living with and surviving brain tumors.
“To say the BRAIN Act means a lot is such an understatement,” Jennifer said. “Knowing that we’re taking the time and space to carve out a better quality of life for people like my mom is huge.”
For Jennifer, her advocacy work is more than personal — it’s a way to honor her mother’s legacy.
“I think my mom would be really proud of the advocacy work I’m doing,” Jennifer said. “I think she would be really happy to see that things are coming together and there’s more traction and movement in the right direction.”
Support the BRAIN Act
The Bolstering Research And Innovation Now (BRAIN) Act (H.R.2767, S.1330) is a historic first for the brain tumor community. This landmark piece of legislation was first introduced with bipartisan support at the end of the 118th Congress (January 3, 2023 – January 3, 2025), and has now been reintroduced in the 119th Congress. The BRAIN Act aims to advance the quest to defeat brain tumors, once and for all, by increasing research funding, fostering collaboration, promoting critical awareness efforts, and supporting innovations in and access to care.
“The passage of the BRAIN Act has the opportunity to really positively alter the lives of patients, caregivers, and their families,” Jennifer said.
We need your help to build momentum by securing additional support and co-sponsors. Will you advocate for the BRAIN Act in the 119th Congress and push for policy changes that directly impact patients with brain tumors?
On July 16, 2025, come together for the seventh annual Glioblastoma Awareness Day. Together, we will raise nationwide awareness about glioblastoma, one of the most common, complex, treatment-resistant, and deadliest types of cancer. NBTS spearheaded this annual event in 2019 to support survivors and their loved ones, to remember those who are no longer with us, and to honor luminaries working toward a cure and better quality of life for those living with this devastating disease.
For everyone living with a glioblastoma diagnosis and their loved ones, it’s time for a better chance.
“A better chance would mean more time with a higher quality of life,” Jennifer said.
