Why was Raymond A. Wood Foundation (RAWF) Created?
On May 21, 2015, everything changed when the unthinkable happened to 4-year-old Alex Wood and his parents. Suddenly diagnosed with a rare brain tumor (called craniopharyngioma), Alex immediately underwent emergency surgery. He survived. But that was only the beginning.
Parents Shawn and Amy soon grappled with more devastating news. Alex’s entire life would be compounded by complications due to the tumor’s origin in the hypothalamus, deep within the brain. Overnight, Alex went from a happy and healthy little boy to facing a long list of consequent medical and neurocognitive conditions, including adipsic diabetes insipidus (DI) and hypothalamic obesity (HO).
When the Woods discovered that there was limited knowledge, therapies and tools to manage these conditions, Shawn and Amy knew it was time to take action. They founded the Raymond A. Wood Foundation (RAWF) to help others navigate this experience.
Since our 2017 incorporation and becoming a 501(c)3) nonprofit organization, RAWF has focused solely on our mission to help survivors of craniopharyngioma and other related tumors and their caregivers and families by providing a source of much-needed information and education about this diagnosis and its comorbidities, as well as by obtaining medical devices that aid with ongoing chronic conditions that result from brain tumor treatment.
The mission of the Raymond A. Wood Foundation is to empower survivors of hypothalamic-pituitary brain tumors with an improved quality-of-life by providing access to education, technology, and evolving treatments. Our vision is to be the patient voice for hypothalamic-pituitary brain tumor patients, survivors and caregivers.
In 2021, RAWF was named a grantee of the Chan Zuckerberg Initiative’s Rare As One Network and, with the funding and resources, the foundation is building its capacity to be the patient voice in research and to work with partners to develop a standard of care in the treatment of craniopharyngioma to mitigate these long-term challenges.
What are the goals of RAWF?
RAWF’s strategic goals include the following:
- Facilitating the establishment of a standard of care that prioritizes the simultaneous optimization of survivorship and quality of life for patients
- Attenuating the most treatment-elusive conditions affecting hypothalamic-pituitary brain tumor survivors’ poor quality of life
- Increasing support to hypothalamic pituitary brain tumor patients and their caregivers throughout the patient journey from diagnosis and treatment through survivorship
What is the focus of RAWF?
The Raymond A. Wood Foundation focuses on craniopharyngioma (CP) and related tumors of the hypothalamic-pituitary axis. No one knows why these tumors occur or what stimulates their formation, except that some can occur in both children and adults. As a result of the location of these tumors within the hypothalamus, numerous treatment challenges and lifelong damage occurs to critical structures affecting speech, mobility, cognition, memory, body fluid balance, temperature regulation, sleep-wake cycles, growth, adrenal response, metabolic function and more.
Survivors can face multiple rare lifelong conditions from these tumors or treatment including diabetes insipidus (a condition affecting body fluid balance); hypothalamic obesity or a chronic weight gain that cannot be controlled by diet or exercise; adrenal insufficiency, a condition in which the body does not produce cortisol to fight infection (this can result in a life threatening adrenal crisis when the body is under extreme stress); panhypopituitarism, an inability for the pituitary gland to secrete hormones; and neurocognitive impairment that can exhibit as decreased mental function, processing delays, and short-term memory loss.
In what ways does RAWF support the brain tumor community?
The Raymond A. Wood Foundation provides education and outreach, family support, data collection and analysis, collaborates with researchers and advocates for better craniopharyngioma treatments and treatments for the conditions that result from tumor treatment.
- Family Support: RAWF provides handheld blood analyzers to pediatric brain tumor survivors with adipsic diabetes insipidus (ADI).
- Innovation: RAWF is collaborating with partners at Children’s Hospital of Philadelphia and Giner Labs on research and development of a home use sodium meter for management of care for patients with diabetes insipidus and other conditions that require blood sodium measurements.
- Education: RAWF holds a yearly family conference and monthly educational webinars on the topics of hormone replacement, hypothalamic obesity, survivorship, research and other areas of interest for patients and families.
- Research: RAWF is currently analyzing the landscape of research around craniopharyngioma and developing a research roadmap with priorities focused on developing a patient registry, support a biobank, and building a collaborative research network of patients, researchers, clinicians, and industry representatives.
- Outreach and Support: RAWF is working to identify the needs of underserved patient communities and provide support services including mentorship and resources.
Why does RAWF support CBTN?
As part of our strategic plan, RAWF has identified the priority of supporting CBTN to grow the craniopharyngioma biobank to enrich data to facilitate and accelerate research on tumor treatment and post-treatment management.