From Lived Experience to Shared Advocacy
Honoring International Brain Tumor Awareness Week with reflections from the University of Arizona College of Medicine–Phoenix’s 1st Annual Neuro-Oncology Symposium — and my co-facilitated Patient Advocacy session with Flo Spyrow, JD, MSN/MHA
By Joh Evans Coleman, PhD, EdD, CNP | Founder & CEO, Meningioma Brain Tumor Network, Inc | October 2026
IN RECOGNITION OF
International Brain Tumor Awareness Week
October 24–31, 2026 • One world, one week, one shared purpose: making brain tumors — and the people who live with them — visible
On Saturday, October 17, 2026, I had the honor of speaking at the 1st Annual Neuro-Oncology Symposium at the University of Arizona College of Medicine–Phoenix. In Room C104 of the Health Sciences Education Building, neurosurgeons, neuro-oncologists, researchers, physician assistants, residents, and medical students gathered for a full day on the science and practice of brain tumor care. Woven through that day—intentionally—was the voice of the patient.
As a meningioma survivor-thriver and Founder and CEO of the Meningioma Brain Tumor Network, Inc (MBTN), I have learned that the most important conversations in brain tumor care happen when clinical and lived experiences sit at the same table. This symposium built that table. Held just one week before International Brain Tumor Awareness Week (October 24–31, 2026), it set the tone for our entire awareness season. As the week ends, I want to share why one session in particular — the Patient Advocacy Discussion I co-facilitated with Flo Spyrow — is the conversation I hope we carry forward all year long.
Honoring International Brain Tumor Awareness Week
Each year, the global brain tumor community comes together for International Brain Tumor Awareness Week at the end of October. In 2026, the week ran from Saturday, October 24, through Saturday, October 31, uniting patients, survivor-thrivers, families, care partners, clinicians, researchers, and advocacy organizations across continents around a shared purpose: raising awareness of brain tumors and the people who live with them.
For MBTN, the University of Arizona symposium was the ideal prelude to this week. Held just seven days before the week began, the symposium embodied everything International Brain Tumor Awareness Week stands for:
● Awareness grounded in science. From medical management and surgical innovation to CAR T therapy, clinical trials, and meningioma risk stratification, the program showed how far neuro-oncology has come—and how much further we must go together.
● Awareness that crosses borders. The Global Neuro-Oncology Perspective panel reminded everyone in the room that brain tumors are a worldwide concern, embodying the very spirit of an international awareness week.
● Awareness that centers people. Two patient perspective sessions and a dedicated Patient Advocacy Discussion placed lived experience alongside clinical expertise.
That is why I am dedicating this post — and my reflections on co-facilitating the Patient Advocacy Discussion with Flo Spyrow — to International Brain Tumor Awareness Week 2026. Awareness week gives the world a moment to pay attention. The symposium showed what that attention can become when clinicians, researchers, trainees, and patients commit to it together.
Why Awareness Must Include the Patient Voice
Awareness is more than a ribbon or a hashtag. For the meningioma community, awareness means understanding what happens after diagnosis, after surgery, after radiation, and long after the scan comes back “stable.” Meningioma is the most commonly diagnosed primary brain tumor and is often described as “benign.” But those of us who live with it know that benign does not mean without burden.
Survivor-thrivers, families, and care partners navigate psychosocial and neurocognitive challenges that shape our health-related quality of life (HRQoL) every day — fatigue, memory and word-finding changes, scan anxiety, shifts in work and identity, and the quiet strain on those who love and care for us. These realities rarely appear on an MRI. They show up in our homes, our workplaces, and our hearts. That is exactly why patient voices belong in rooms full of clinicians and future clinicians.
Two Sessions, One Message
I was privileged to contribute to the symposium in two ways — as a speaker and as a co-facilitator with Flo Spyrow:
Time | Session | Speaker(s) |
10:00–10:20 a.m. | Living with Brain Tumor — Patient and Family Perspective | Joh Evans Coleman, PhD, EdD, CNP |
11:20–11:40 a.m. | Patient Advocacy Discussion / Q&A (co-facilitated) | Flo Spyrow, JD, MSN/MHA Joh Evans Coleman, PhD, EdD, CNP with additional speakers |
1:25–1:45 p.m. | Guest Speaker — Patient Perspective | Flo Spyrow, JD, MSN/MHA |
In Living with Brain Tumor — Patient and Family Perspective, I shared my own journey as a meningioma survivor-thriver: the moment of diagnosis, the decisions that followed, and the long road of recovery and adaptation that continues well beyond treatment. I also spoke to the experience of families and care partners, who carry so much of this journey alongside us and are too often left out of the conversation.
Spotlight: Co-Facilitating with Flo Spyrow, JD, MSN/MHA
The heart of my day was co-facilitating the Patient Advocacy Discussion and Q&A with Flo Spyrow. Flo brings a rare and powerful combination of perspectives to advocacy—legal training, nursing, and healthcare administration—along with her own lived experience, which she also shared as the afternoon’s Guest Speaker on the Patient Perspective. Few people can speak so fluently to the clinical, the systemic, and the personal at the same time.
Our purpose was simple: to turn lived experience into actionable advocacy, and to open a genuine two-way dialogue between patient advocates, clinicians, and the trainees who will become tomorrow’s brain tumor care teams. Together, we framed the conversation around four threads:
● Patients as partners. Shared decision-making works best when patients and families are equipped, informed, and invited to ask questions — and when clinicians create space for those questions.
● Navigating the system. Building on the morning’s Care Navigation and Neuro-Oncology session, we spoke to what it takes to find specialists, seek second opinions, understand coverage, and learn about clinical trials.
● Survivorship beyond the scan. Psychosocial and neurocognitive outcomes deserve the same attention as tumor control. HRQoL is not a secondary endpoint for those of us living it.
● Caring for care partners. Families and care partners need their own resources, recognition, and support.
“Benign does not mean without burden. Advocacy is how we make sure the whole person is seen — not just the scan.”
What moved me most was the openness in the room. When clinicians, researchers, and medical students lean into the patient experience, advocacy shifts from being something done “for” patients to something we build together. Flo, thank you for your partnership, wisdom, and courage in sharing your story.
Gratitude to Our Clinical Partners
I am deeply grateful to the University of Arizona College of Medicine–Phoenix and to everyone who made this inaugural symposium possible. Special thanks to Robert Bina, MD, and Ekokobe Fonkem, DO, who opened the day. Dr. Fonkem, an inaugural MBTN board member and a steadfast champion of our community, also presented on Innovations in Brain Tumor Diagnosis and Management and joined the Global Neuro-Oncology Perspective panel.
I also want to recognize Ramya Tadipatri, MD, whose session on Risk Stratification of Meningiomas spoke directly to our community, and keynote speaker Manmeet Ahluwalia, MD, along with every presenter, resident, and medical student who shared their work. The commitment to collaboration across research, education, and clinical care was evident from the first session to the last.
CoLaB-orating Together: What Comes Next
At MBTN, our work rests on five pillars: advocacy, awareness, education, support services, and resources. This symposium touched every one of them, and International Brain Tumor Awareness Week amplified them on a global stage. The week may end on October 31, but awareness has no end date. I invite you to carry it forward with us:
● Survivor-thrivers, families, and care partners: Share your story with us. Your experience shapes how we advocate and what resources we build.
● Clinicians, researchers, and trainees: Partner with MBTN. Refer patients and families to our community and include the patient voice in your education, research, and care.
● Friends and supporters: Share this post, follow MBTN, and help us become the national and international hub for the meningioma community.
To Flo, to the University of Arizona College of Medicine–Phoenix, to everyone around the world who marked International Brain Tumor Awareness Week, and to every survivor-thriver who has ever wondered whether their voice matters — it does. Let’s keep CoLaB-orating Together this week and every week.
With gratitude and resolve,
Joh Evans Coleman, PhD, EdD, CNP
Founder & CEO, Meningioma Brain Tumor Network, Inc
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