Meet Bostyn, Latest Handheld Blood Analyzer Recipient
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.
2022 Research Progress on Craniopharyngioma
Learning How to Drive Research
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.
Raymond A. Wood Foundation Welcomes New Board Member and Elects New Chair
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.
Dear Parents: Here’s What I Want You to Know About Managing HO
Meet Franklin Knowles, Our Latest Handheld Blood Analyzer Recipient
Meet Franklie Knowles, 10, our latest handheld blood analyzer recipient. Frankie was diagnosed with a pilomyxoid astrocytoma (PMA) when he was 6 years old and difficulty managing sodium levels have persisted long after almost all other tumor complication has stabilized. He has had several hyponatremic seizures that resulted in hospitalizations.
The Raymond A. Wood Foundation Launches ROAR for RARE
The Raymond A. Wood Foundation (RAWF) – a patient-led, rare disease advocacy organization – announces the launch of ROAR for RARE, a campaign to raise $500,000 over the next year and a half to fund four critically needed projects that will drastically improve the quality of life for hypothalamic-pituitary (H-P) brain tumor survivors.
Raymond A. Wood Foundation Named Grantee of Chan Zuckerberg Initiative Rare As One Network
Ocean City, MD (November 3, 2021) — It was announced today that the Raymond A. Wood Foundation (RAWF), a patient-led, rare disease advocacy organization for survivors of hypothalamic-pituitary brain tumors, has been selected as a grantee of the Chan Zuckerberg Initiative (CZI) Rare As One Network, aimed at supporting and lifting up the work that patient communities are doing to drive progress in the fight against rare diseases.
Ten Year “Cranioversary” Parent Reflection
On August 23, 2011, Alex, our then-8-year-old son was diagnosed with a brain tumor called craniopharyngioma. We were told that although he would likely survive the surgery, he would be left with chronic medical conditions in its aftermath including “diabetes insipidus, panhypopituitarism, hypothalamic obesity...” I couldn’t absorb any explanations about medical terminology because my head was reeling from the shock of being told that my little boy had a brain tumor.
Craniopharyngioma survivor, Azalea, age 2, receives blood analyzer
Meet Azalea, 2, a silly music loving two year old who lives in Sacramento, California.
Azaleas parents started this journey with a couple of trips to the ER due to episodes of non-specific vomiting, and received the most devastating news a parent is ever prepared for. On the 14th of September 2020, Azalea was diagnosed with a very large craniopharyngioma for her tiny brain and body.