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.
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.”
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.
Contributed by Lynne Mathies, craniopharyngioma survivor and RAWF intern “At the end of the day, …
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 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 (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.
The Raymond A. Wood Foundation (RAWF) whose mission is to empower hypothalamic-pituitary brain tumor survivors …
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.
If you have a school-age survivor and you are in the beginning weeks of school or preparing for the start, transitioning to a new year can be daunting task. We enlisted the advice of Katy Bosserman, a special education advocate, on preparing your child and working with the IEP team. Watch this video and check out some great tips and resources to help navigate the beginning of the 2021/22 school year.
