What happens when the experiences of patients and caregivers become the starting point for research, advocacy, and innovation?
At the Raymond A. Wood Foundation (RAWF), they become a catalyst for change.
Throughout FY2026, the foundation advanced its mission to improve quality of life for hypothalamic-pituitary brain tumor survivors. From publishing new research to expanding international registry access, strengthening treatment advocacy, and reaching significant milestones in medical technology development, the year demonstrated the power of listening to patients and turning what they share into action.
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2026 Highlights
A Landmark Achievement for Our Community
On March 19, 2026, the FDA approved IMCIVREE® (setmelanotide) for adults and children ages 4 and older with acquired hypothalamic obesity, making it the first and only FDA-approved therapy specifically for aHO.
RAWF helped bring the patient perspective into the path toward this milestone through clinical-trial awareness and recruitment, patient-centered education, advocacy for treatment access, and the collection and sharing of lived-experience data.
Bringing at-home medical innovation closer to reality
RAWF continues to advance the development of an at-home sodium meter designed to help individuals safely monitor sodium levels from home. This year marked a significant milestone with the successful development and validation of the device’s proprietary cartridge, bringing the technology one step closer to clinical use.
RAWF, in partnership with Giner, Inc and Children’s Hospital of Philadelphia, will continue working to make this innovation accessible, affordable, and impactful for patients and families.
Alongside the device development work, RAWF continued supporting families with access to at-home testing through our Handheld Blood Analyzer Program.
During FY2026, the foundation distributed four analyzers to families across the United States, helping them monitor sodium levels at home in coordination with their healthcare teams. These devices are helping families reduce emergency room visits and hospitalizations while supporting quality of life.
Turning lived experience into scientific advancement
Thanks to the Hypothalamic-Pituitary Brain Tumor Patient Registry, two peer-reviewed publications drew on patient and caregiver experiences: Treatment Priorities in Craniopharyngioma and Advancing Understanding of Hyperphagia in Craniopharyngioma.
To expand participation beyond English-speaking communities, RAWF introduced French and Spanish translations, making the registry more accessible to a broader population and creating more opportunities for international participation.
Fostering connection to maximize impact
In November 2025, we held our biannual Pituitary Brain Tumor Family Conference, bringing patients, caregivers, clinicians, researchers, and advocates together for education and connection.
Centered on the theme “Together in Knowledge, Stronger in Community,” the conference explored clinical research, tumor treatment, endocrine care, hypothalamic obesity, financial advocacy, and emerging therapies. Survivor and caregiver roundtables gave participants opportunities to exchange experiences, while a dedicated conversation about grief created space for reflection, understanding, and resilience.
RAWF also expanded its educational resources in January 2026 with the launch of an on-demand video platform, making conference presentations and educational content available beyond live events.
Fundraising Highlights
- DC’s Dancing Stars Gala returned, raising $116,000.
- Benign Is Not Fine, our Brain Tumor Awareness month campaign, raised awareness of the lifelong consequences of so-called “benign” brain tumors and generated $62,908
- Team RAWF ran the NYC Half Marathon, raising nearly $20,000
Looking ahead: A future shaped by patients
The achievements of FY2026 demonstrate what becomes possible when patient experiences guide scientific discovery, treatment advocacy, and practical innovation. Read the full report to learn more about our impact.