Epilepsy Phenome/Genome Project

We have yet to find the under-lying cause of Trevor's IS. Like many parents, we may never know.

It is an insane & scary place to be...this land of unknowns. It took awhile for me to understand that infantile spasms is simply a symptom of something else. Because Trevor's life is still unfolding, we have no idea how IS will impact his future. We only know how it has impacted his past & present.

And because of that...we covenanted as a family that we would participate in any way we could to help provide information for future IS families & maybe stumble on answers ourselves.

The following clinical trial is one way that we (and perhaps you) can offer hope to others whose lives have yet to be touched by IS.

Who can participate in EPGP?

Do you have a sibling with epilepsy?

If so, and your epilepsy is not due to a very obvious cause, such a significant head injury, brain infection, or stroke, then you may be eligible to participate.
EPGP is for men, women, and children between the ages of 4 weeks and 60 years old who have epilepsy with a brother or sister who has epilepsy.
EPGP also seeks patients with infantile spasms, Lennox-Gastaut Syndrome, and malformations of cortical development who have both parents willing to volunteer.
If you believe you, a family member, or a patient meet these criteria and may wish to participate, please use
this form to contact us.
About Participating
Before you decide whether to participate in any clinical research study, you should educate yourself to become familiar with how clinical trials work, what may or may not be expected of you and what the potential risks and benefits of participating may be.
A short guide to clinical research and links to other resources are available by clicking

*** the above information was taken from
www.epgp.org where you are able to access complete details ***


Reagan Leigh said...

Thanks for the info. I'm going to sign up for the study through Baylor here in Houston.

baby trevor's mommy said...

I'm glad you guys are able to participate. I'll be hoping that it might lead you to some answers...and help other families in the future!