The proceedings have been published in the Journal of Inherited Metabolic Disease     Volume 32 No 3 June 2009



First Annual Symposium on Pediatric Neurotransmitter
Diseases May 18 to 19, 2002 Annals of Neurology Vol 54 Supplement 6 2003 For a free copy of the Journal
[email protected]


2004 PND Family Conference
Hyatt Regency, Crystal City, VA
May 17th-19th

    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.

Photo Gallery from the Conference

Conference Agenda

July 15th Thursday
7:00pm-9:00pm                   Welcome Reception/ Registration

July 16th Friday
8:30 am- 9:00am                Opening Session
                                            PND Association Welcome/Meet the Boards

9:00am - 12:30pm               Session I Disease Overviews and Updates
Darryl C. De Vivo, MD - Opening Remarks Overview Pediatric Neurotransmitter Diseases

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

Katherine Swoboda, MD- "Tyrosine Hydroxylase Deficiency, GTPCH, A Clinical, Biochemical and Molecular Update".  To include treatment approach and Neurotransmitter Disease Database update.

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

Phillip Pearl MD- SSADH

Maria Acosta MD, Clinical Research Fellow- Update Clinical Trials, Database SSADH

1:30pm-3:00pm                 Session II Neurological and Rare Disease Research

Andrea Gropman MD - "An Overview of Neurological and Rare Disease Research.
Future Directions for PND's".

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

3:15pm- 5:00pm              Session III Disease Breakout Sessions

Roundtable discussions on Specific PND's

6:30pm-9: 30pm               Dinner Banquet

July 17th Saturday
9:00am- 9:15am               Introduction/ New Business

9:15am- Noon                Session IV   Building a Therapeutic and Educational Team
                                       For  Your Child Presentation- Kennedy Krieger Institute -
                                       Center for Neurological Rehabilitation of Children and
                                       Young Adults                                         
                                        Joan Carney, M.ED
                                        Jennifer E. Dawson, Ph.D
                                        Kelly Dunkleberger, OTR/L
                                        Kathy Ferguson, M.S. CCC-SLP
                                        Heather McLean, MPT
                                        Lynnley Moore, M.A. CCC-SLP
1:00 pm- 4:00pm           Session VI   Resources For your Child and Family

1:00pm-2:00pm               Lynne Wolfe PNP, RN, MS - "Push Me/Pull You;
                                        How to Get the Information and Resources  you
                                        need for your Child"

2:15pm-4:30pm               Don Meyer, Director Sibling Support Project of the ARC of
                                        the United States "Brothers and Sisters of People with
                                        Special Needs: Unique Concerns, Unique Opportunities".

6:30pm                             Family Fun Event 
                                         (Boat ride to the Washington Monuments)

July 18th Sunday
9:00am- 11:00pm             Brunch

9:30am- 10:00am             Board of Directors Report to the Families
                                         Past accomplishments/Visions for the Future

10:00am-10: 30am           Question and Answer

10:30am- 11:00am           Closing Remarks/Goodbyes

Some comments;
"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

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."