named programs · 1 · from sources
What they call their work
GBM Bill of Rights
A patient-centered framework outlining 11 rights for people with glioblastoma, including access to second opinions, specialist care, clinical trials, psychological support, and patient-owned health data.
activities · 3 groups
What they do
-
Medical Research & Education Dissemination 4 activities
- Conducting and disseminating research on glioblastoma care disparitiesConducts nationwide surveys with over 500 participants to collect data on disparities in glioblastoma treatment and care, analyzes findings, and publishes results including in white papers and research posters presented at major oncology conferences such as ASCO, SNO, and AONN+.
- Hosting GBM Voices educational webinar seriesProduces and hosts educational webinars through the GBM Voices series, featuring neuro-oncology experts and covering topics such as advanced care planning and palliative care, to provide practical support for patients and caregivers.
- Operation of OurStoryBank platformRuns the OurStoryBank initiative to collect and share personal stories from the glioblastoma community, amplifying patient and caregiver voices through digital and social media platforms.
- Publication and dissemination of glioblastoma research findingsProduces and publishes white papers such as "GBM – The Neglected Cancer in the Treatment Revolution," presents research at academic conferences, and makes de-identified datasets and full-resolution posters available to approved researchers to support further study.
-
-
Cancer Awareness and Education Initiatives 1 activity
- Advocacy for glioblastoma patients and care partnersAdvocates for patients with glioblastoma brain tumors and promotes awareness through initiatives such as Glioblastoma Awareness Day on July 15 and the GBM Bill of Rights, which guides patients and caregivers on accessing care. Organized advocacy efforts at national events including the Biden Cancer Initiative launch.
-
-
Uncategorized 2 activities
- Establishment of Medical Advisory BoardFormed a Medical Advisory Board composed of leading neuro-oncology and neurosurgery experts from major academic medical centers to guide medical strategy and content development.
- Research on isolation and loneliness in the GBM communityConducted a nationwide study on isolation and emotional isolation among glioblastoma patients and caregivers, identifying loneliness as a key unmet need, and presented findings in multiple poster presentations at the ASCO annual meetings in 2026.
-
financials · form 990EZ · fy2025
revenue
Total revenue$156K
Contributions & grants$149K96%
Program service revenue$00%
Investment income$7K4%
Other revenue$0
expenses
Total expenses$195K
Program expenses79%
Admin / overhead13%
Fundraising8%
Salaries & benefits—
Grants paid out—
Largest expense lineCompensation
balance sheet
Total assets$220K
Cash$319K
Investments$0
Liabilities$29
Net assets$220K
Liquid reserves19.7 mo
6 years on record · 2020–2025 · YoY revenue +45.6%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| Kelli Duprey | Excecutive director/Vice Chairman | 25 | $75K |
board members · 8
- Christy Hoffman — Trustee
- Edward Westfall — Trustee
- Greg Grevera — Trustee
- Jacob Ellen — Trustee
- Katherine Onk — Trustee
- Rich Micali — Trustee
- Sundas Hashmi — Trustee
- Tess Pilkington — Trustee
relationships · 26
Who they work with
- AONN+ Partner — Research presented at Academy of Oncology Nurse & Patient Navigators (AONN+) conferences.
- ASCO Government — Presented research findings at the American Society of Clinical Oncology annual meeting.
- ASCO Partner — Research presented at American Society of Clinical Oncology (ASCO) conferences.
- ASCO (American Society of Clinical Oncology) Partner — Presented research on GBM patient and care partner loneliness at the ASCO 2026 annual meeting.
- American Society of Clinical Oncology Network — Presented research at the ASCO annual meeting
- American Society of Clinical Oncology Partner — Presented research at the ASCO annual meeting on GBM patient and care partner loneliness.
- American Society of Clinical Oncology Partner — Presented research at the ASCO annual meeting.
- Biden Cancer Initiative Partner — Engaged with the Biden Cancer Initiative to advocate for patient-centered glioblastoma research and care.
- Brigham and Women’s Hospital Partner — Collaborates with neurosurgery leadership at Brigham and Women’s Hospital through advisory roles.
- British Neuro-Oncology Society Partner — Launched the "GBM – The Neglected Cancer in the Treatment Revolution" white paper at its conference in Manchester.
- Columbia University Irving Medical Center Partner — Collaborated with OurBrainBank on a nationwide study on loneliness in glioblastoma patients and caregivers.
- Columbia University-New York Presbyterian Partner — Includes faculty from Columbia University-New York Presbyterian in its medical advisory network.
- Dana-Farber Cancer Institute Partner — Collaborated with OurBrainBank on a nationwide study on loneliness in glioblastoma patients and caregivers.
- Dana-Farber Cancer Institute Partner — Collaborates with neuro-oncology and neurology faculty from Dana-Farber Cancer Institute.
- Duke University Partner — Collaborated with OurBrainBank on a nationwide study on loneliness in glioblastoma patients and caregivers.
- Good Morning America Partner — Featured OurBrainBank trustee Sundas Hashmi in a segment on brain cancer awareness.
- Hartford HealthCare Cancer Institute Partner — Includes neuro-oncologists from Hartford HealthCare Cancer Institute in its advisory board.
- Harvard Medical School Partner — Collaborated with OurBrainBank on a nationwide study on loneliness in glioblastoma patients and caregivers.
- Harvard Medical School Partner — Engages faculty from Harvard Medical School as medical advisors.
- Memorial Sloan Kettering Partner — Engages dermatology expertise from Memorial Sloan Kettering through advisory roles.
- NYU Langone Partner — Includes neurosurgeons from NYU Langone in its medical advisory network.
- National Institutes of Health Government — Engages pain and palliative care leadership from the National Institutes of Health in its advisory board.
- OurBrainBank Network — Organization providing resources and support for GBM patients and caregivers.
- SNO Partner — Research presented at Society for Neuro-Oncology (SNO) conferences.
- Stanford Brain Tumor Center Partner — Collaborates with the Stanford Brain Tumor Center through shared leadership and advisory roles.
- University of Rochester Medical Center Partner — Collaborates with the James P. Wilmot Cancer Institute at the University of Rochester Medical Center through speaker Jennifer Serventi, MS, PA-C.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Early Integration of Palliative and Advance Care Planningmethodology: early-palliative-careBy integrating palliative care and advance care planning early in the glioblastoma journey, medical decisions align with patient values and goals, improving quality of life throughout treatment, because early psychosocial and symptom support reduces suffering and enhances decision-making.
- Expert-Guided Patient Educationmethodology: patient-educationBy providing patients with accessible, comprehensive information about GBM co-developed with clinical experts, informed decision-making is empowered, because credible, expert-vetted education increases patient agency beyond standard treatment pathways.
- Patient-Powered Advocacy and Researchmethodology: patient_powerBy centering patients and families in the development of advocacy frameworks like the GBM Bill of Rights and collecting real-world data, systemic inequities in glioblastoma care are exposed and leveraged to drive policy change, because lived experience reveals gaps that clinical data alone cannot.
- Storytelling and Peer Support as Community Empowermentmethodology: peer-story-sharingBy sharing personal stories through social media and peer networks, individuals navigating glioblastoma feel less isolated and gain practical insights, because lived experience fosters connection and understanding that clinical information alone cannot provide.