PND Accomplishments

• 1998 -First Board Meeting- Recognized need for representation of children with diseases of neurotransmitter metabolism. Developed and designated Pediatric Neurotransmitter Diseases (PND) as an umbrella term for genetic disorders that affect the synthesis, metabolism and catabolism of neurotransmitters in children.
  
• 1999- PND Association established as first disease organization representative of children with diseases of neurotransmitter metabolism. Diseases presently designated to be represented ALADD, SSADH TH Deficiency, GTP I Cyclohydrolase deficiency. Immediate mission determined to increase public and professional awareness.
  
• 2000 Incorporated and received 501c3 non-profit status. Developed Medical & Scientific Advisory board.
  
• Completed national and international mass mailing to pediatric neurologists.
  
• Presented professional educational workshops on PND's; 2000 World Congress on Disabilities, 2001 Child Neurology Nurses, 2002 Child Neurology Society Conference
• Launched with the generous support of the Hoffman Family PND Website
  
• Exceptional parent magazine article highlighted "PND Organization"
  
• Developed and implemented family and professional registry
  
• Awarded Keith Hyland PHD $6000 towards purchase of Bio-Rad Decode System used for rapid DNA screening and facilitates earlier detection of PND's.
  
• Awarded Mike Gibson PHD $6000 towards GHB Research Fund
  
• Launched online PND support group
  
• Co-Sponsored with NIH Office of Rare Disease and National Institute Of Neurological Diseases and Stroke First Symposium on Pediatric Neurotransmitters Washington DC 2002
  
• Delegated PND International Disease Representatives
  
• Advocated and sponsored supplemental publication of symposium proceedings by
  Annals of Neurology
  
• 2002 Medical and Scientific advisory board reports that testing for PND's has increased 150% over the last two years.
  
• Membership
• 1999 8 families (handful of doctors, scientists)
• 2002 226 registered members*
• 127 Professional members
• 99 Families (50 confirmed diagnosed PND's)

 

(* Registered member- this includes members who registered via phone or email prior to electronic registration. )

• 2003 $50,000 clinical research grant program developed