Accomplishments of the Association
- 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 representing children with diseases of neurotransmitter metabolism.
- Completed national/international mailing to child neurologists included "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.
- Developed family/professional registry and support for PND clinical databases.
- Launched PND online support group.
- Presented/ Exhibited; Child Neurology Society, American Society Human Genetics.
- 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.
- 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.
- PND Research Grant Program established.
- $245,000 Awarded to Research On Behalf of Pediatric Neurotransmitter Diseases
- PND members meet with Genzyme to introduce PND's and discuss AADC gene therapy trial
- PND's are now being listed in child neurology text books with entire chapters devoted to the diseases that we represent.
- PND members lobby on capital hill with Parkinson's Action Network on behalf of children with neurotransmitter diseases
- The National Institute of Neurological Disease and Stroke,The Office of Rare Diseases, The Johns Hopkins School of Medicine and The PND Association Present: The Medical Management of Pediatric Neurotransmitter Disease: A Multidisciplinary Approach
- Exceptional Parent - Editor Rick Rader - article on PND Association-Double Vision
- PND research grant program awards $164,0000 to research on behalf of PND's
- PND members attend AADC International conference.
- New website launched
- PND meets with MJ Fox Foundation - PND's introduced on foundation site
- $12,500 to development of AADC mouse model
- PND collaborates on AADC gene therapy clinical trial
- Krystof Bankiewicz awarded $40,000 for development of AADC gene therapy clinical trial