THE GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS

Description

In 2010, parents Shannon Butalla and Melissa Gamble joined to co-found the Global Foundation for Peroxisomal Disorders, bringing together families impacted by peroxisome disorders, including Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) and the related single enzyme peroxisomal disorders.

When the GFPD was incorporated and received its 501(c) (3) public charity designation in 2010, we were a small parent support group of approximately 50 families. Just five years later, the GFPD registry connects more than 300 families from 30 countries and we have a Scientific Advisory Board comprised of leading researchers and physicians in the field of peroxisomal disorders. Our biennial Family and Scientific Conferences bring together families and professionals from around the world to meet and collaborate on ways to improve the lives of patients with peroxisomal disorders.

Through these connections with medical and scientific professionals and family support networks, our foundation is a resource for families who have received a diagnosis of a peroxisomal disorder in the Zellweger spectrum. Our Board of Directors is made up of parents of children who have been diagnosed with disorders in this spectrum plus community allies. Members of our Board of Directors, Scientific Advisory Board, and other volunteers, have dedicated their time and talents to the many families who make up the GFPD.