2004 PND Family Conference
Hyatt Regency, Crystal City, VA
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
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
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
"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."