Our Mission

Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome) is a disease of deficiencies. DHA deficiency is most pronounced, but there are other deficiencies that rear their heads. Bile acid deficiency and low cholesterol in Zellweger children have been documented in scientific literature for years, as well as deficiencies in the fat soluble vitamins, A, D, E, and K. Some Zellweger children become adrenal insufficient. By simple correction of these few items, the Zellweger’s child can show improvement in biochemical measurement and in quality of life. Zellweger’s…Writing a Different Story is about sharing the successes of how this is done in sequence, products, and therapy.

We as parents hold the future in our hands. We also are invested with the drive and motivation to search out answers to our children’s dilemma. The era of personalized medicine provides us with the tools to explore new treatments based on specific genetic data and to employ the knowledge of the field of epigenetics to regulate gene expression. It is an exciting time to see the development of the convergence of not just deficiency support, but also multiple modes of therapies impacting our children’s health in very positive ways.

Zellweger’s…Writing a Different Story supports research which benefit children with Peroxisomal Biogenesis Disorders, not only in addressing their known genetic deficits, but also in connecting their personal genetic profiles with appropriate nutraceuticals which support desired gene expression. Research for Zellweger’s benefits other children also, crossing lines into research for mitochondrial disorders, cystic fibrosis, multiple sclerosis, and autism. Zellweger’s…Writing a Different Story was inspired by our children’s lives, by our desire to help them and others, and by our compassion for those who follow our steps in searching for answers to these devastating disorders.