Raymond A. Wood Foundation Releases FY 22 Annual Report
The Fiscal Year 2022 (July 2021 - June 2022) Annual Report has been released and details our programs and initiatives, impact by the numbers, financial breakdown and our goals in the coming year.
New Website Feature: Clinical Trial Finder
The Raymond A. Wood Foundation continues to add features to the website rawoodfoundation.org to better support our patient, survivor and caregiver community. Last month we launched a page for those who are newly diagnosed to find important resources and support. This month, we launched a page dedicated to giving patients access to clinical trials specific to craniopharyngioma and its comorbidities engineered by Power, a company whose mission is to “help more patients find treatments and speed up the process of medical science as we go.”
RAWF Hosts Patient Listening Session on HO
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.
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.