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.
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.
Last weekend, the Raymond A. Wood Foundation (RAWF), a brain tumor patient advocacy nonprofit organization, hosted the Pituitary Brain Tumor Virtual Conference in partnership with the Children’s Hospital of Philadelphia (CHOP). The event brought in an audience of brain tumor survivors and caregivers from around the globe.
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.”
Hypothalamic obesity (HO) is a devastating condition that can come from treatment of a tumor …
Virtual, hybrid, synchronous, asynchronous — there are a lot of terms floating around about how the school year is starting under the circumstances of the COVID-19 pandemic. Uncertainty looms large among students and parents as a whole, but for special education students with IEPs, there are many question marks as to how to navigate the upcoming school year to ensure that our children receive the appropriate education and services they need to be successful.
