11-Year-Old Aliyah, Craniopharyngioma Survivor, Receives Medical Device
2019 was a year that changed Aliyah’s life forever when she was diagnosed with the …
RAWF
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.
A Story of a True Warrior – Meet Evie McCollum
Evie is a craniopharyngioma survivor who also battles adipsic diabetes insipidus Evie McCollum is a …
Meet the Latest Handheld Blood Analyzer Recipient – Finn, age 6
On December 11, 2021, Finn, a six-year-old from Spokane, WA, was airlifted from Sacred Heart ER to Seattle Children’s Hospital due to the complex growth of a tumor in his brain. which was causing vision loss and impaired brain function.
New Website Feature: Clinical Trial Finder
The Raymond A. Wood Foundation continues to add features to the website rawoodfoundation.org to better support our patient, survivor and caregiver community. Last month we launched a page for those who are newly diagnosed to find important resources and support. This month, we launched a page dedicated to giving patients access to clinical trials specific to craniopharyngioma and its comorbidities engineered by Power, a company whose mission is to “help more patients find treatments and speed up the process of medical science as we go.”
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
Contributed by Lynne Mathies, craniopharyngioma survivor and RAWF intern “At the end of the day, …
Caregiver Support: Redefining Thoughts and Regaining Your Power
November is National Family Caregivers Month which is a time to recognize and honor caregivers while raising awareness of caregiving issues. We took some time with Crystal Carnahan, a certified life coach, who focuses on helping women prioritize themselves to expand into more joyful living, to talk about mindset in caregiving.
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.
