About Us

We are a group of parents who believe it matters what kind of story our children’s lives tell. We live our stories and our stories are about what has worked and not worked with Zellweger’s Syndrome. Every family’s story has merit, and every child’s life is incredibly valuable. We have stories of hope, and stories of grief. Hope can be delicate, especially when facing a difficult problem with intense suffering for a very long time. A message of hope can seem naive…but hope is absolutely necessary to keep open to possibilities amidst the uncertainties and harsh realities of a rare disorder as Zellweger’s Syndrome. We do not offer hope as in thinking everything will be changed, but we offer hope in what has changed in our children’s lives for the better because we had an open mind to search for answers and to prove those answers.

Much is different in the world of bioscience and medicine. The traditional approach was to sit back and wait for someone to create drugs to fix the problem while the parents exhausted themselves raising money. A more contemporary approach is not to sit and wait, but to be actively celebrating measured recovery by the things we can do. It is possible, if we think and be involved in researching for understanding and share the peculiarities an open mind discovers, to inspire and to contribute to what we want our children’s doctors to accomplish. Like good scientists who test the possibilities, we can find solutions that will benefit our precious children.

“The strongest force in the universe is a parent of a child with a rare disorder.” – Sheldon Schuster, Ph.D., Keck Graduate Institute President & NORD Board of Directors, Oct. 21, 2015

“This is really an extraordinary time.” – Christopher P. Austin, M.D., Director, NCATS, NIH, on the promise of research, Oct. 21, 2015