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.
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.
Abigail Memmesheimer, age 14, of Staten Island, New York, is our latest handheld blood analyzer recipient. Abby was recently diagnosed with a hypothalamic-optic nerve germinoma and has undergone chemo and will soon be going through radiation. Staci, Abby’s mom, shares Abby’s brain tumor story.
The Raymond A. Wood Foundation welcomes Marci Serota, RDN to our board of directors. Marci …
Hypothalamic Obesity (HO) is a rare condition often brought on by injury of the hypothalamus …
In 2016, my son was 13 years old and a 5-year-survivor of a brain tumor called craniopharyngioma. While we were grateful that he had survived the tumor and surgery, his quality of life was poor due largely to hypothalamic obesity with hyperphagia, a cruel condition characterized by symptoms including uncontrollable hunger and rapid weight gain. To prevent him from eating as much as his ravenous appetite dictated, we resorted to locking up all food and keeping a constant watch of him lest he steal food. It was an exhausting, depressing, and unsustainable lifestyle.
In late 2020, Raymond A. Wood Foundation engaged TREND Community with support of the Craniopharyngioma Survivors Facebook Group to analyze topics discussed in the group to produce the Community Voice Report. The Community Voice Report follows the FDA’s patient input Guidelines for Patient-Focused Drug Development meetings and aims to quantify disease burden, disease management strategies, and possible unmet needs.
