Welcome to the Global Foundation for Peroxisomal Disorders (GFPD)! We are here to serve and be a resource for persons impacted by peroxisomal disorders (GFPD Warriors), their families, caregivers, bereaved families, the medical and scientific community, and those interested in learning more about this rare and terminal disease.
My name is Ryan Maple and I am the Executive Director for the GFPD. I have proudly served the GFPD on the Board of Directors (2022), as Board Treasurer (2023), and now as Executive Director. My wife, Ashley, and I have four children, including our GFPD Warrior, Archer. Our diagnosis journey, without the availability of newborn screening for Archer’s peroxisomal disorder at that time, took until he was 18 months old after several months of testing. The GFPD was quick to welcome us, however, and that first Family and Scientific Conference ended with us no longer feeling alone. We have attended every conference since, and I can honestly say that the second half of my 20-year career as a Marine Corps officer would not have been possible without the support of our GFPD family. Ashley and I have relied heavily on the expertise of our scientific advisors and the experience of our families to shape decisions for Archer, ranging from dietary and feeding concerns through the vast array of therapies, specialists, and even ER visits.
The GFPD offers family support programs including the equipment exchange, extended family support, bereaved family support, and virtual events to foster a feeling of belonging in our community.
We offer support for peroxisomal disorder research in the form of grants, and by promoting participation in research studies to our community members. Our GFPD Patient Registry is an ongoing effort with NORD to drive peroxisomal disorder research. We have worked with the FDA by hosting an Externally-Led Patient-Focused Drug Development Meeting at our 2024 Family and Scientific Conference. As a result, a Voice of the Patient Report is being developed to give Warriors and their families a voice directly to the FDA to help shape future treatments for peroxisomal disorders.
The GFPD advocates for all rare disease patients during Rare Disease Day, a day where constituents speak with Legislators about the importance of policy change to support rare disease patients in America. Another day of advocating specifically for GFPD Warriors is PAUSE for the GFPD, on October 5th each year.
My family and I found our place of belonging at the GFPD, and we hope we can do the same for you. Our community is a hub of expertise on peroxisomal disorders and we look forward to sharing it with you. We thank you for your interest and support in our foundation.
Ryan Maple, MBA, ChFC®
Executive Director