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Community Voice Report Provides Insight Into Topics Discussed Among Craniopharyngioma Community

Advocacy, Latest Research, Uncategorized

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.

Community Voice Report Provides Insight Into Topics Discussed Among Craniopharyngioma Community

Hailey, a JPA Survivor, Receives Handheld Blood Analyzer

Blood Analyzer Recipient, Uncategorized

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.

Hailey, a JPA Survivor, Receives Handheld Blood Analyzer

Pituitary Brain Tumor Virtual Conference A Success

Events, RAWF News, Uncategorized

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.

Pituitary Brain Tumor Virtual Conference A Success

Honoring Caregivers in November

Caregivers, Craniopharyngioma

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.”

Honoring Caregivers in November

Experts Weigh In – Special Education, IEPs and the Virtual School Year

Education, Uncategorized

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.

Experts Weigh In – Special Education, IEPs and the Virtual School Year

Registration is Open for Pituitary Brain Tumor Virtual Conference

Education, Events, Uncategorized

Registration is now open for the Pituitary Brain Tumor (PBT) Virtual Family Conference hosted by Raymond A. Wood Foundation (RAWF) in partnership with the Children’s Hospital of Philadelphia’s (CHOP) Division of Endocrinology and Diabetes. Originally named the Pituitary Brain Tumor Day to be held this past May at CHOP, the event was postponed until November in light of COVID-19 and is now officially going virtual. The PBT Virtual Conference is slated for Saturday, November 14th and Sunday, November 15th via Zoom and includes keynotes, breakout sessions, roundtables and virtual family networking.

Registration is Open for Pituitary Brain Tumor Virtual Conference

Compassion Fatigue and Caregiving – A Professional and Personal Perspective

Caregivers, Uncategorized

Last week, we discussed the subject of compassion fatigue in the healthcare industry with Jessica Dale, a parent of a brain tumor survivor or “brain tumor mom” and expert on the subject.

This week, we discussed her personal experience as a parent of a child, that is now a young adult, survivor of a pediatric brain tumor. We asked for tips on how to avoid pitfalls that families of children and adolescents with special health care needs face.

Compassion Fatigue and Caregiving – A Professional and Personal Perspective
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Raymond A. Wood Foundation
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