How We Support Your Craniopharyngioma Patients and Advance Research
At the Raymond A. Wood Foundation, we partner with clinicians to improve quality of life for patients living with complex effects of craniopharyngioma. Our work is grounded in lived experience, scientific inquiry, and real-world tools to support long-term care.
We offer a range of programs designed to reduce care burdens and improve outcomes for survivors and caregivers:
- Peer support and education through live and on-demand webinars, a bi-annual conference, and virtual support groups
- Condition-specific resources to help families navigate hormone replacement, cognitive effects, and hypothalamic obesity
- Navigation support to help patients access clinical trials, second opinions, and experienced providers
We welcome collaboration with healthcare providers who share our commitment to addressing the complex, lifelong needs of this community. Please email us at outreach@rawoodfoundation.org to connect.
Survivors at the 2025 Pituitary Brain Tumor Family Conference at Children’s Hospital of Philadelphia
Managing the Complexities of Hypothalamic Syndrome
Many survivors of craniopharyngioma experience lasting dysfunction of the hypothalamus, resulting in a cluster of interconnected challenges known as hypothalamic syndrome. This condition can include arginine vasopressin deficiency (AVP-D), hypothalamic obesity, dysautonomia, cognitive challenges, temperature regulation issues, sleep disruption, and more.
Arginine Vasopressin Deficiency (Diabetes Insipidus)
AVP-D is one of the most critical and potentially dangerous outcomes of hypothalamic damage, especially when paired with impaired thirst perception (adipsia). To help patients and families manage this safely at home, RAWF is advancing two innovative programs:
- At-Home Sodium Monitoring Tool
In development: A simple, caregiver-friendly solution for checking blood sodium levels in real time, aimed at reducing emergency visits and providing early warning for imbalances. - Handheld Blood Analyzer for Adipsic Patients
For patients who are medically fragile and frequently hospitalized due to sodium instability, we maintain a limited loan program for clinical handheld blood analyzers. These devices allow families to monitor sodium levels at home, under physician guidance, to reduce emergency room visits and improve safety.
Clinicians may inquire about access for eligible patients by emailing outreach@rawoodfoundation.org.
These programs were created in direct response to caregiver need and are guided by clinical collaboration and safety protocols.
Beyond AVP-D: Supporting the Broader Impacts of Hypothalamic Syndrome
Hypothalamic syndrome affects multiple body systems and requires lifelong, multidisciplinary care. RAWF is working to:
- Increase awareness among clinicians and researchers of the full scope of hypothalamic dysfunction
- Support families with education on managing hypothalamic obesity, dysautonomia, cognitive impacts, and emotional health
- Advance research into unmet needs through our Patient Registry and collaboration with global experts
- Advocate for the recognition of hypothalamic syndrome as a distinct and fundable condition
Collaborating to Improve Long-Term Management of Care for Craniopharyngioma Survivors
RAWF supports patients across the full spectrum of survivorship by partnering with clinicians and researchers to improve understanding, care, and quality of life.
Our work includes:
- Education and resources on managing hypothalamic obesity, adrenal insufficiency, cognitive impacts, and other sequelae of craniopharyngioma
- Collaboration with providers and researchers to explore best practices for long-term care and improve care coordination across specialties
- Support for clinical and translational research that seeks to define hypothalamic syndrome as a distinct clinical entity
- Patient-led data collection through the Hypothalamic-Pituitary Brain Tumors Patient Registry — capturing real-world outcomes to identify care gaps and inform future research
We welcome collaboration with healthcare providers who share our commitment to addressing the complex, lifelong needs of this community. Please email us at outreach@rawoodfoundation.org to connect.