Raymond A. Wood Foundation
The Raymond A. Wood Foundation advocates on behalf of hypothalamic-pituitary brain tumor patients, survivors and caregivers. One of the primary tumors of this type is craniopharyngioma, which affects children and adults.
Patient leader Amy Wood got involved in the rare disease space out of love and desperation to help her son, who was diagnosed with a craniopharyngioma at age four in 2015. For her son, and others like him, she is determined to lead the Raymond A. Wood Foundation to improve the quality of life for craniopharyngioma patients and their families.
As part of the Rare As One Network, the organization’s first goal is to expand the outreach of their mission to its most underserved and adversely impacted populations, namely African American patients. They also aim to develop a patient-led collaborative network to build bridges between medical specialties to meet the unmet needs of patients whose conditions fall between the cracks of medical disciplines.