How can you help?

Do you know someone who have never heard of Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD) before?
Start talking about PBD-ZSD. Share Ethan's story with them. Read about PBD-ZSD and help us let the world know about these rare disorders.

Do you have the financial means to donate to the cause?
Whether it is $5 or $5,000 any donation is appreciated. You can donate online at or if you would like to sponsor a fundraiser for the Global Foundation for Peroxisomal Disorders (GFPD) contact and let her know your idea (jewelry party, walk-a-thon, bake sale, auction, etc.)

Are you able to send an email or a letter in the mail?
If so, contact your local, state and federal legislatures and let them know that it is important to support kids with special needs and their families. Let them know how crucial Early Intervention services are to kids 0-3 and how important special education programs are to school aged children.

Are you pregnant or know someone who is?
If you are pregnant or know someone who is and you/they aren't planning on banking the child's umbilical cord for their own family, please don't let it be thrown away! Donate it - it is FREE, ETHICAL, and COULD SAVE A LIFE! Who knows, this type of medical technology might someday be a means for a cure for genetic diseases, like the one Ethan has!
Visit to learn more!

Are you considering starting a family or adding to your family?
If so, you may want to consider taking a simple saliva test that would test you and your partner's carrier status for over a hundred different diseases. The test by Counsyl could let you know if you and your partner are at risk for having a child with a rare disease. We had never heard of this before we had Ethan, but if we had done this, we would have found out that Jeff was a carrier for the G843D mutation. The test can't test everything and my mutation is more rare and wouldn't have been identified, but at least we would have had a heads up, etc. You can learn more about carrier screening at

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