“Align your decisions to your desired quality of life today. Live presently and familiarize yourself with those things that you fear. Consider healing, wellbeing, wholeness, and personal growth that may come through experiencing illness. We each face the same reality, we are, all of us, living while dying. Let’s make the most of it.” – Adam Hayden
It is with a heavy heart that we share news of the passing of philosopher, writer, and National Brain Tumor Society (NBTS) board member Adam Hayden on December 20, 2025. Adam lived for nine years with a malignant glioma and made an indelible mark on the brain tumor community through his writing, advocacy, and deeply empathetic leadership. A dedicated father, husband, and friend, Adam leaves behind his wife and caregiver Whitney Hayden, their three sons, Isaac, Noah, and Gideon, and countless other family, friends, and people he’s impacted during his life.
“Adam had an uncommon ability to make even the most complex, cutting-edge science feel human and purposeful,” said David Arons, President and CEO of NBTS. “He helped ensure that conversations about research and treatment were ultimately conversations about people — their hopes, their challenges, and their lives. His perspective changed how many of us think about progress, reminding us that innovation must always be measured by its impact on patients and families.”
Since his diagnosis in 2016, Adam chronicled his life with terminal brain cancer in his blog Glioblastology. A philosopher by training, Adam explored such themes as living while dying, humanity in the often clinical patient experience, and the importance of “ending well” – approaching end of life with acceptance and intention. In addition to his blog, he spoke regularly about his experience on social media, in public appearances, and on Capitol Hill to increase awareness of the urgent, unmet needs of the brain tumor community, and he was well known and respected for his ability to articulate the impacts of this devastating disease with poise, grit, and humor. He published often in academic and scientific presses, including Science, Philosophy in Review, STAT News, and The Polyphony.
“Adam was a strong and vital member of the brain tumor community. He was a compassionate and thoughtful facilitator, inspiring and brilliant advocate, and beloved by many across the country,” said Kim Wallgren, executive director of the CERN foundation, a program of the National Brain Tumor Society, fellow Indiana resident, and good friend to Adam. “Even more, Adam and Whitney both shared their life through the lens of illness, but were not defined by the disease.”
Adam brought his sense of curiosity and human understanding to NBTS’s Brain Tumor Support Conversations, which he spearheaded with fellow peer leader and caregiver, Lisa O’Leary. For eight years, Adam showed up on the first Sunday night of each month to bear witness to the experiences of those in the community. His inherent warmth and exceptional facilitation skills brought comfort to thousands joining virtually from around the world. His legacy lives on in these monthly sessions, which continue to grow and thrive today.
“Adam demonstrated remarkable strength to extend support and concern for others while facing his own devastating illness,” Wallgren added.
Adam served on the NBTS Board of Directors for four years. An energized contributor to the Board’s Treatments and Community Committees, as well as NBTS’s Research Roundtable Program, Adam brought the patient voice to every conversation, including those with researchers, industry, and members of the FDA. He was a regular participant in NBTS’s signature advocacy event, Head to the Hill. He and Whitney also led the A&W Tumor Takedown Tailgate, a local event influencing nearly $100K in gifts to NBTS since 2018.
Adam was awarded the Jan Esenwein Public Service Award in Neuro-Oncology in 2022 from the Society for Neuro Oncology, and in 2023 served as a National Cancer Institute Visiting Scholar Lecturer. He served on the American Association for Cancer Research (AACR) Scientist – Survivor Program, and was a Stanford University Medicine X ePatient scholar. Among his many leadership roles at the community and government level, Adam was a Biden Cancer Moonshot panel speaker and volunteer consumer reviewer with the Congressionally Directed Medical Research Programs. His leadership and advocacy helped secure millions of federal dollars for brain tumor research. Read Adam’s obituary here.
Honor Adam
We invite the community to share reflections and memories about Adam to commemorate his legacy. If you would like to do more:
