Silas Johnson Named Next Recipient of a Handheld Blood Analyzer
Silas Johnson, age 8, lives with his mom Chelsea, dad Casey and 1.5 year-old brother Ackley in Cody, Wyoming. Silas was diagnosed with a craniopharyngioma brain tumor in January of 2017 and, as a result, suffers from diabetes insipidus (DI) a condition where, due to injury, the pituitary gland does not excrete the anti-diuretic hormone (ADH0, thus making blood sodium levels difficult to manage.
Survivor Spotlight: Daniel Levy
Competitive sports have always been a major part of my life. I was at swim practice one morning in the summer of 2014, I was 14 years old. I had experienced episodes of extreme euphoria about twice a day for several months, I had later found out those episodes were aura seizures. But this particular morning the aura seizure was extremely intense. Last thing I remember is standing in the swim team locker room. I had fallen and hit my head on a concrete bench, as a result suffered an extremely severe concussion. after being rushed to the hospital I had a brain scan and it was discovered I had a brain tumor in my front right temporal lobe.
Blessings
Three years ago today life changed for my son, Alex. In a matter of 24 hours, his life journey took a major turn from being a typical 4-year-old boy doing typical 4-year old boy things to a child that would face of lifetime of medical, emotional and physical challenges. We woke up this very morning three years ago the same as we always do, business as usual, but with one little telltale sign that landed him in an MRI hours later and emergency brain surgery the next day.
Brain Tumor Awareness Month: How Do We Get From Surviving to Thriving?
As I march into Awareness Month this May as a mother of a brain tumor survivor and an advocate for all pediatric survivors and their parent-caregivers, I have come to the realization that I am simply not feeling it this year. I am at a low in this journey. I will refer to it as battle weary.
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.
Merry Christmas, Molly
Meet Molly Brenner, 19, from Kansas, who will be receiving a handheld blood analyzer to help manage her diabetes insipidus making her our third recipient. Molly was diagnosed with a craniopharyngioma brain tumor in 2012 on her at age 14 on her fourth day of high school. Her tumor was removed via a craniotomy at Childrens Mercy Hospital in Kansas City. Molly suffers from diabetes insipidus (DI), hypothalamic obesity (HO), adrenal insufficiency (AI) and is visually impaired. Recently, she was diagnosed with pulmonary vasculitis. Unfortunately, the parts of the brain impacted by this tumor treatment control the overall health of the rest of the body which can leave patients like Molly susceptible to other diseases.
Mikey O’Connell, Virginia Fifth Grader, First to Receive Medical Device from RAWF
Sterling, VA — Countryside Elementary School fifth grader Michael “Mikey” O’Connell was selected by the Raymond A. Wood Foundation (RAWF) to receive a handheld blood analyzer, a hospital-grade device that is critical to managing a chronic condition called diabetes insipidus (DI). O’Connell suffers from this condition as a result of removal of a craniopharyngioma, which is a benign brain tumor that affects the hypothalamus and pituitary gland.
Survivors of a Rare Brain Tumor and Their Families Meet Up in Ocean City
Ocean City, MD — Survivors of craniopharyngioma, a rare and complex benign brain tumor, and their families joined together for the inaugural East Coast Cranio Survivors Picnic at Northside Park in Ocean City on Saturday. The group also included spouses, parents, siblings and grandparents, who provide support to each other on Facebook as part of a group page specific to the tumor. The picnic was organized in part by the Raymond A. Wood Foundation (RAWF), whose mission is to provide quality-of-life support for survivors of childhood brain tumors and their families.
RAWF Director “Heads to the Hill”
Washington, D.C. — Amy Wood, director of the Raymond A. Wood Foundation, joined the Maryland contingency to “Head to the Hill” Tuesday with the National Brain Tumor Society to advocate for legislation to fund brain tumor research. Wood is mother to Alex, a 6-year-old brain tumor survivor and kindergartner at Ocean City Elementary School.
