About Us

The goal of the association is to work with families, health care professionals and researchers to promote the following;

• Provide information and support to patients and families affected by pediatric neurotransmitter diseases.
• Increase public awareness and act as a source of information for health care professionals.
• Establish and coordinate a network among affected families, health care professionals and the research community.
• Promote public and private support and funding for pediatric neurotransmitter disease research.

The association was founded in 2000 by parents John and Nancy Speller and Brad and Carolyn Hoffman and was incorporated and received 501c3 status in the year 2000.  The association membership is comprised of families who are affected by a pediatric neurotransmitter disease, their family and friends, healthcare professionals and researchers/scientists who have an interest in our diseases. The association is governed by a volunteer Board of Directors comprised of parents of children with pediatric neurotransmitter diseases. The Medical and Scientific Advisory Board is comprised of pre-eminent experts in the field and is chaired by Darryl C. De Vivo MD.

The PND Association is a member of the following organizations:Genetic Alliance www.geneticalliance.org, National Organization for Rare Disorders (NORD)  www.rarediseases.org WE MOVE (Kids Move) www.wemove.org/kidsmove, Life in Motion  www.life-in-motion.org