Who we are
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….Read more
To improve the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and empowering families and professionals through educational programs and support services.
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, (including those formally known as Neonatal Adrenoleukodystrophy (NALD) and Infantile Refsum Disease (IRD)), as well as single enzyme disorders D-Bifunctional Protein Deficiency (DBPD) and Acyl-CoA Oxidase Deficiency (ACOX deficiency). Our Board of Directors is made up of parents of children who have been diagnosed with disorders in this spectrum, as well as members of the Tulsa, OK community where the the GFPD is headquartered. 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.
In the days before the GFPD was founded, families were just beginning to use the Internet to connect, discovering that other families like theirs were out there. John Harris moderated a website and an email list-serve for families whose children’s symptoms were mostly at the moderate or mild end of the disease spectrum, while Pam Freeth connected parents of children with the most severe presentation of this disease through the Zellweger Baby Support Network. 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 six 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.
A peroxisomal disorder on the Zellweger spectrum (sometimes referred to as Zellweger syndrome) means that the peroxisomes in your cells aren’t working properly, are absent, or are severely decreased. Peroxisomes are necessary for cell function, normal brain development, and the formation of myelin.