Craniopharyngioma diagrama

2022 Research Progress on Craniopharyngioma

by Nathalie Kayadjanian, Ph.D., RAWF Scientific Advisor Image Credit: National Cancer Institute While surgery and ... Read more

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 ... Read more

A Story of a True Warrior – Meet Evie McCollum

Evie is a craniopharyngioma survivor who also battles adipsic diabetes insipidus Evie McCollum is a ... Read more

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, ... Read more

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.

Will You Help Us?

My husband and I started this foundation in 2017 with a simple idea to provide handheld blood analyzers to brain tumor survivors like our son Alex. We had struggled so long to effectively manage his diabetes insipidus and the analyzer changed our lives. We knew others needed to have access to this device so we set out to remove the barriers to getting them. We quickly realized that there were so many other issues that needed to be tackled both for Alex and other survivors — issues likely faced by you or your child or loved one.

Honoring Caregivers in November

On October 30, 2020, the White House issued a proclamation that November 2020 is National Caregivers Month, in recognition of the import role of caregivers, stating that “America’s heroes have earned and deserve our respect and gratitude, and their caregivers deserve the same.”

Survivor Spotlight: Sydni Gajewski

In just a few short weeks, Sydni Gajewski of Pottstown, PA, will be graduating college. And, while graduating college is a an amazing achievement for any person, for Sydni, this accomplishment is even more sweet given the challenges she faces daily from a diagnosis and removal of a brain tumor at age 6.