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.
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.”
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.
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.