2
Peer-reviewed publications
Patient Registry data contributed to research on treatment priorities and hyperphagia in craniopharyngioma.
The year at a glance
Progress driven by our community
Patients and caregivers helped shape research, innovation, advocacy, and support throughout FY26.
100+
Conference participants
Patients, caregivers, researchers, clinicians and sponsors came together in Philadelphia.
4
Handheld blood analyzers
Distributed to families to support sodium monitoring from home.
Research & innovation
From lived experience to scientific evidence
Patient and caregiver perspectives are helping RAWF shape research priorities, support new evidence, and advance practical solutions for life after a hypothalamic-pituitary brain tumor.
Research that matters
Data from the Hypothalamic-Pituitary Brain Tumors Patient Registry contributed to two peer-reviewed publications on treatment priorities and hyperphagia in craniopharyngioma. A third manuscript examining fatigue was under scientific review during FY26.
A more global patient voice
The Registry became available in English, French, and Spanish, widening opportunities for international participation and more representative patient-centered research.
Advancing an at-home sodium meter
RAWF supported development and validation of a proprietary cartridge for an at-home sodium meter, a key milestone toward a technology designed to support safer sodium monitoring at home.
Research and advocacy
Turning patient voices into scientific progress
Research that matters
Two peer-reviewed publications drew on patient and caregiver experiences: Treatment Priorities in Craniopharyngioma and Advancing Understanding of Hyperphagia in Craniopharyngioma. A third manuscript examining fatigue was under review.
Expanding global participation
The Hypothalamic-Pituitary Brain Tumors Patient Registry expanded to English, French, and Spanish, making it easier for more families to contribute their experiences.
At-home sodium meter
RAWF advanced cartridge development and validation for an at-home sodium meter, while exploring future regulatory and commercialization pathways.
Advocacy for treatment access
RAWF contributed patient perspectives to treatment-access discussions and helped elevate lived experience during the development and review of therapies for acquired hypothalamic obesity.
Community and care
Connection is part of the impact
2025 Pituitary Brain Tumor Family Conference
Held November 15–16 at the Children's Hospital of Philadelphia, the conference brought more than 100 people together for learning, peer connection, and conversations about resilience and grief.
Support beyond the conference
RAWF continued monthly caregiver and survivor support groups and offered individualized grief support.
Practical support at home
Four handheld blood analyzers were distributed to families, alongside training and ongoing support.
Patient voices
In their own words
Behind every research finding is a person or family living with the lasting effects of a hypothalamic-pituitary brain tumor. Their experiences help define what progress should look like.
“...it's a life sentence because it really has affected me for life.”Kathleen
Life after tumor treatment
“The hyperphagia was just, it's extremely socially isolating.”Erin
Life with hypothalamic obesity and hyperphagia
“After the surgery, she is very weak—almost helpless—and sleepy all day; she is constantly dozing and lacks the energy to do anything.”Maria
Her daughter’s fatigue
These perspectives are featured in the FY26 Impact Report.
Watch patient stories ↗Milestones
A year of forward movement
July 2025Finalized RAWF’s FY2026–FY2029 Strategic Plan.
November 2025Hosted the Pituitary Brain Tumor Family Conference in Philadelphia.
January 2026Launched an on-demand video platform for educational content.
March 2026Published research on patient priorities and hyperphagia; contributed to treatment-access discussions.
May 2026Launched the Benign Is Not Fine campaign, generating $62,907.55 in support.
June 2026Expanded the Patient Registry with French and Spanish translations.
Financial stewardship
Investing in meaningful progress
Total revenue$734,504.95
Total expenses$831,461.62
Cash in reserves$546,636
How expenses were allocated
Programs — 71%Operations — 21%Fundraising — 8%
RAWF strategically drew on reserves to fund multiyear research and program commitments. See the full PDF for revenue sources and additional financial context.
Help move the mission forward
Better options begin with lived experience.
Support patient-centered research, advocacy, innovation, and resources for hypothalamic-pituitary brain tumor survivors and their families.
Support our work ↗Read the full FY26 report ↗Request a Printed Copy ↗