2004 PND Family Conference
July 15th-18th

The PND Associations first family conference was held July 15-18 2004 at the Hyatt Regency, Crystal City, Virginia. Members of the PND Medical & Scientific advisory board and invited speakers provided up to date information on PND's. Guest speakers included Don Meyer Director, Sibling Support Project of the Arc of the US. and H.Ronald Zielke PhD Director, National Institute of Health University of Maryland School of Medicine Brain and Tissue Bank for Developmental Disorders. Over 35 families and their affected children and siblings attended the two day conference.

Click here to view a photo gallery of the 2004 PND Family Conference.

Listed below are the sessions that made up the 2004 PND Family Conference. 

Session I - Disease Overviews and Updates                                          

"Opening Remarks and Overview of Pediatric Neurotransmitter Diseases"
Darryl C. De Vivo, MD

"Aromatic L-Amino Acid Decarboxylase Deficiency and Sepiapterin Reductase Deficiency:
  A Clinical, Biochemical and Molecular Update"
Keith Hyland, PhD

"Tyrosine Hydroxylase Deficiency and GTPCH:
  A Clinical, Biochemical and Molecular Update"
Katherine Swoboda, MD

"Murine SSADH Deficiency: Progress in Understanding the Pathology"
K. Michael Gibson, PhD

"SSADH"
Phillip Pearl, MD

"SSADH Clinical Trial and Database Update"
Maria Acosta, MD

Session II - Neurological and Rare Disease Research                                 

"An Overview of Neurological and Rare Disease Research: Future Directions of PNDs"
Andrea Gropman , MD

"Brain and Tissue Bank for Developmental Disorders"
H. Ronald Zielke, PhD
National Institute of Health
University of Maryland School of Medicine

Session III - Disease Breakout Session

"Specific PND Rountable Discussion"
Family and Medical Members

Session IV - Building a Therapeutic and Educational Team for Your Child    

"Panel Presenation by members of the Kennedy Krieger Institute, Center for Neurological Rehabilitation of Children and Young Adults"

Joan Carney, M. ED
Jennifer E. Dawson, PhD
Kelly Dunkleberger, OTR/L
Kathy Ferguson, M.S. CCC-SLP
Heather McLean, MPT
Lynnley Moore, M.A. CCC-SLP

Session V - Resources for your Child and Family

"Push Me / Pull You: How to Geth the Information and Resources you need for your Child"
Lynne Wolfe, PNP, RN, MS

"Brothers and Sisters of People with Special Needs: Unique Concerns, Unique Opportunities"
Don Meyer
Director, Sibling Support Project of the ARC of the United States

Comments received from some of the attendees:                                         

"There aren't words to express how grateful I am to have had the opportunity to attend this wonderful family PND conference. It was such a blessing to my family and I know it will change ___ life for good."  

"What a great conference. All the families were greatly touched."

"I learned so much and we are looking forward to the next PND family
Conference"

We had a wonderful time and so appreciated the chance to connect with Dr Pearl & Dr. Gibson as well as many amazing parents."

"It was a wonderful conference."