RAWF Hosts Patient Listening Session on HO
The Raymond A. Wood Foundation (RAWF) whose mission is to empower hypothalamic-pituitary brain tumor survivors …
RAWF
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.
Transitioning to the New School Year
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.
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.
Meet Abigail, the Latest Handheld Blood Analyzer Recipient
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.
Marci Serota, RDN Joins RAWF Board of Directors
The Raymond A. Wood Foundation welcomes Marci Serota, RDN to our board of directors. Marci …
Hypothalamic Obesity Update in NORD’s Rare Disease Database
Hypothalamic Obesity (HO) is a rare condition often brought on by injury of the hypothalamus …
Hope for HO through Oxytocin
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.
Community Voice Report Provides Insight Into Topics Discussed Among Craniopharyngioma Community
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.
Hailey, a JPA Survivor, Receives Handheld Blood Analyzer
Hailey Lamca of Basking Ridge, New Jersey, was a healthy, active kid who loved to play soccer and excelled in school, but in 2017, she was diagnosed with a hypothalamic juvenile pilocytic astrocytoma (JPA) at the age of 12.
Since her diagnosis she has had 11 surgeries and 6 weeks of proton radiation therapy and is now living with the side effects of her treatment.
