Accomplishments of the association include;
Developed and designated Pediatric Neurotransmitter Disease as an umbrella term for genetic disorders that affect the synthesis, metabolism and catabolism of neurotransmitters in children.
PND Association established as first disease organization representative of children with diseases of neurotransmitter metabolism.
Completed national/international mailing to child neurologists which included, information on how to recognize and test for PND’s.
Presented/Exhibited; World Congress on Disabilities, Child Neurology Society.
Launched PND Website.
Exceptional Parent Magazine article highlighted PND Organization.
Membership 8 families in US.
Developed family/professional registry and support for PND clinical databases.
Launched PND online support group.
Presented/ Exhibited; Child Neurology Society, American Society Human Genetics.
First “Chip for Charity Golf Outing” on behalf of PND Association
Co-sponsored with National Institute of Health Office of Rare Disease and National Institute of Neurological Diseases and Stroke the First International Symposium on Pediatric Neurotransmitter Diseases, May 2002, Washington DC.
Keith Hyland awarded $6000 towards purchase of Bio-Rad Decode System for rapid DNA screening for earlier detection of PND’s.
Mike Gibson awarded $6000 towards GHB Research Fund.
Membership 200 families worldwide.
Annals of Neurology released July 2003 supplement on Pediatric Neurotransmitter Diseases distributed to 7000 worldwide.
2003 Medical & Scientific Advisory Board reports that PND testing increased 150% over last two years.
First Family Conference, July 2003, Washington DC
Keith Hyland PhD, awarded $22,000 towards purchase of HPLC autosampler and HPLC fluorescence detector for PND enzyme assays.
Phillip L. Pearl MD awarded $30,000 SSADH research fellowship.
Presented/Exhibited; First International Symposium on Pediatric Movement Disorders, American Society for Experimental Neurotherapeutics, American College of Medical Genetics
Simon Heales, PhD awarded $10,000 towards purchase of equipment to expedite PND testing in the UK.
Launched New PND Website.
2005 PND Research Grant Program established.
Membership approximately 600 worldwide.
Grant Review Committee Established. Chaired by Darryl C. De Vivo, MD Columbia University Medical Center.
$245,000 Awarded to Research On Behalf of Pediatric Neurotransmitter Diseases through the PND Research Grant Program
The National Institute of Neurological Disease and Stroke, The Office of Rare Diseases, The Johns Hopkins School of Medicine and The PND Association Presented a Medical and Family Symposium July 18th and 19th in Herdnon VA called Medical Management of Pediatric Neurotransmitter Disease: A Multidisciplinary Approach
PND’s are now being listed in child neurology text books with entire chapters devoted to the diseases that we represent.