Bostyn was diagnosed and treated for a craniopharyngioma brain tumor in the summer of 2021 and since then, daily labwork has been a requirement to manage diabetes insipidus, a condition, caused by the tumor or treatment, where the brain can no longer manage the body’s fluid balance. This can cause high or low blood sodium which can be fatal if not managed properly, but management of this condition is tricky.
The Raymond A. Wood Foundation Joins Fellow Rare As One Network Organizations in a Convening Hosted by Chan Zuckerberg Initiative
Grantees of the Chan Zuckerberg Initiative (CZI) Rare As One (RAO) Network convened this past week in San Diego, California for three days of training on advancing research in their respective diseases.
The Raymond A. Wood Foundation (RAWF), a rare disease patient advocacy organization, whose mission is to empower survivors of hypothalamic-pituitary (H-P) brain tumors with an improved quality of life by providing access to education, technology, and evolving treatments, announces exciting changes to the foundation’s board of directors including the addition of Christine Selko and the election of Eugenie Hsu, Ph.D. as chairperson.