This is an excellent question.
Our mission has three pieces: conduct research, help affected individuals, and educate medical professionals. In order to accomplish these goals we have a wonderful staff of full- and part-time individuals who spend many, many hours (including almost every night and weekend) working hard to execute the mission and make sure questions are answered quickly and correctly.
Our CEO, Sharon Terry, is also the CEO of Genetic Alliance, which not only gives PXE International great access to every new tool in healthcare but also allows Sharon to maintain her work with PXE International in a volunteer capacity. Our staff not only works hard because it is their job but also because they are passionately dedicated to the research, support and education that we provide. The Budget chart shows the breakdown of how donations are spent by PXE International.
Education and support are the two smaller portions of the financial pie with this organization. We spend the vast majority of your donations on research. We award research grants to scientific labs all over the world every year. We collect and store thousands of blood and tissue samples in our BioBank. We hold research conferences that help scientists from different labs and countries collaborate and share in order to inspire further research and advance toward an effective treatment. All this is accomplished with your donations.
Here are some concrete examples of what we can do with your donation. The great leaps forward will start with the smallest step. Please consider helping us get to a point where those diagnosed today will not be told they might lose their central vision. They will instead be told of the treatments that will make life with PXE barely noticeable.
Thank you so much for your generosity.