Today, the Raymond A. Wood Foundation (RAWF) announces a new mission to empower hypothalamic-pituitary brain tumor survivors for improved quality of life by providing access to education, technology, and evolving treatments. The mission expands the foundation’s reach to include adult survivors and narrows its focus to the tumors that occupy the hypothalamus and pituitary gland. Tumors in these brain regions can significantly impact on the regulation of a broad range of physiological and behavioral processes including endocrine function, metabolism, water balance, memory and social functioning, vision, growth, and stress response.
Founded in 2017 by Shawn and Amy Wood in honor of their son, Raymond “Alex” Wood, who was diagnosed at age 4 with a craniopharyngioma, a rare tumor that develops in the hypothalamus and pituitary gland, RAWF’s original mission was to provide quality-of-life support to pediatric brain tumor survivors and their caregivers. The foundation’s first objective was to provide medical devices to patients to manage diabetes insipidus, a rare and potentially fatal condition often resulting from damage to the brain areas responsible for the regulation of fluid balance in the body. This can lead to extremely high or low blood sodium levels and can have severe medical consequences. In the last three years, 17 pediatric patients from all over the nation have received these devices free of charge which has helped caregivers better manage this condition while offsetting laboratory and emergency department visits and hospitalizations.
As the foundation has grown, the unmet needs of survivors of these types of brain tumors has become clear as caregivers struggle to provide appropriate care and find access to therapies or treatments that could improve life for their loved ones. Tumors in this category include craniopharyngioma, germinoma and germ cell tumors, hypothalamic hamartoma, low grade glioma, large adenoma, optic pathway glioma, pilocytic astrocytoma, and prolactinoma. While survivors may suffer from a combination of physiological and behavioral issues, a large majority of those with significant hypothalamic impact see greater long-term challenges. Prognoses depend on size and location of tumors as well as method of treatment, whether total tumor resection, partial resection, radiation or a hybrid of approaches.
“These tumors tend to fall outside of many missions in the brain tumor community because most are benign in nature and highly survivable,” said Amy Wood, Executive Director of RAWF. “That’s the good news, but survival comes at a high price from the rare and challenging side effects, the stress on caregivers and the cost burden that comes with ongoing care.”
The other big change in direction is that RAWF also is expanding to include those survivors diagnosed in adulthood since these tumor types can occur in pediatric patients, commonly between ages 5 to14 and adults typically between the ages of 50 to 74. The challenges that adult and pediatric survivors experience can be very much the same.
“We were finding that adult survivors and their caregivers were eager for support and access to educational resources and by expanding our mission, we are able to meet that need.” Wood stated.
With the new mission in place, RAWF is working to offer survivors and caregivers educational resources through conferences and virtual sessions with medical experts, connecting survivors through support meetings, partnering with clinicians and researchers to find new therapeutic approaches for these conditions, and developing technology to provide expanded access to resources and improve doctor-patient communication.
“We started small and are growing strategically to ensure we fill a specific niche,” said Wood. “As we grow our board of directors, build our capacity, develop a robust scientific advisory committee and rally around this new mission, I am optimistic that our work will significantly contribute to a brighter future for this community of brain tumor survivors.”