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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.

Medical Monday: An Inspiring Story of Mom Advocacy

Today’s Medical Monday highlights a recent podcast produced by RAWF board member and mom-advocate Eugenie Hsu who interviews Maria Picone of TREND.

The Raymond A. Wood Foundation Announces New Mission Statement

Raymond A. Wood Foundation (RAWF) announces a new mission to empower hypothalamic-pituitary brain tumor survivors for improved quality of life by providing access to education, technology, and evolving treatments. The mission expands the foundation’s reach to include adult survivors and narrows its focus to those tumors that occupy the central part of the brain and impact the endocrine system, metabolic processes, cognition and behavior, vision, growth, stress response, and other important body functions.

Making the Most of Your Telemedecine Appointments

In the last few weeks, we have adapted to so many changes — from working at home to schooling our kids to strategic planning of grocery store trips. Many of us have also experienced the evolving frontier of telemedicine appointments. Telemedicine may open some new doors for patients with rare medical conditions to access specialists that geographically may have been impossible to see through traditional in-person appointments. That would be an exciting development to come of this current crisis.

COVID-19 Preparedness for Caregivers of Brain Tumor Patients with Neuroendocrine Conditions

If you are a parent/caregiver of a child with neuroendocrine side effects of a brain tumor, the concern over the coronavirus (COVID-19) doesn’t just include worries that he or she may contract the virus. There could potentially be a shortage of medications and concerns over management of the chronic conditions that sometimes require emergency department visits in a normal health climate.

Denied? How to Deal with a Health Insurance Denial.

It’s that feeling of dread every time I open the letters from our health insurer. Is it going to be a denial? No matter how many times a denial happens, I go into panic mode. Instantly, I am calculating how many phone calls will be made, how many letters to write, how long will it take. These inevitably come on a Saturday so my panic gets to settle in all the way until Monday.

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.

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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.

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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.