Our Mission

Peroxisomal Biogenesis Disorders (Zellweger’s Syndrome) is a disease of deficiencies.

DHA deficiency is most pronounced, but there are other deficiencies. Bile acid deficiency

and low cholesterol in Zellweger children have been documented in the 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, 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 invest drive and motivation, searching 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 knowledge

in the field of epigenetics to regulate gene expression. It is an exciting time to see a

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 benefiting children with

PeroxisomalBiogenesis Disorders, not only in addressing their known genetic deficits but also in connecting their personal genetic profiles with appropriate nutraceuticals to

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.