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Focus on the Future
2009 NUCDF Annual Conference
Held July 24-26, 2009
The Hilton Pasadena
168 South Los Robles Avenue
Pasadena, California 91105
AGENDA
| Fri, July 24 |
All Friday Events will be held at
NUCDF offices, 75 S. Grand Ave., Pasadena, CA |
| 1:00 pm - 3:30 pm |
Low-Protein Cooking Workshop (limited to 20 participants— preregistration required) led by Debra Geary-Hook, RD, MPH, Metabolic Dietician, Miller Children’s Hospital Metabolic Team Center, Irvine, CA |
| 3:45 pm - 5:00 pm |
From IEPs to Lunch—Dealing with School Issues moderated by Allison Seielstad, EdS, NCSP, and Debra Geary-Hook, RD, MPH. |
| 6:30 pm - 9:00 pm |
WELCOME RECEPTION: All conference participants are invited to attend this opportunity for patients, families and healthcare providers to meet each other and exchange information in an informal setting. Children are also invited to attend. We have some special surprises planned! Refreshments will be available. |
| Sat, July 25 |
Saturday Events will be held at Hilton Pasadena, 168 S. Los Robles, Pasadena
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| 7:30 am - 8:00 am |
Continental Breakfast for attendees
of presentations. |
| 8:00 am - 8:10 am |
Welcome – Opening Remarks, Tresa Warner, President NUCDF |
| 8:10 am - 8:45 am |
Keynote Address – “Focus on the Future—New Clinical Research for UCDs” Mark Batshaw, M.D. Geneticist, Developmental Pediatrician, Children’s National Medical Center, Washington, D.C., Principal Investigator, Rare Disease Clinical Research Centers Urea Cycle Disorders Consortium (UCDC). |
| 8:45 am - 9:15 am |
“Focus on Outcomes– Improving Management of UCDs” Brendan Lee, M.D., Ph.D., Geneticist, Baylor College of Medicine, Houston, TX. |
| 9:15 am - 10:00 am |
“Focus on Discovery—MRI Imaging, Capturing Changes in the Brains of UCD Patients,” Andrea Gropman, M.D., Neurologist, Children’s National Med Ctr, Washington, D.C |
| 10:00 am - 10:10 am |
Break |
| 10:10 am - 11:00 am |
“Focus on Understanding — How UCD Affects Brain Function and Behavior.” Cullen Gibbs, Ph.D., Katy Child Psychology Associates, Houston, TX, Urea Cycle Disorders Consortium Neuropsychological Study, Baylor School of Medicine, Houston, TX |
| 11 am - 11:45 am |
“Focus on Stability — Nutritional Management of UCDs,” Debra Geary-Hook, RD., MPH, Metabolic Dietician, Miller Children’s Hospital Metabolic Team Center, Irvine, CA
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| 12 pm - 1:15pm |
Luncheon Buffet and Special Raffle |
| 1:30 pm - 4:45 pm |
Afternoon Workshop Sessions A & B (Subject to Change) |
| 1:30 pm - 3 pm |
Session A— Workshop: Breakouts by Disorder (OTC, ASA, etc.) |
| 3 pm - 3:15 pm |
Break |
| 3:15 pm - 4:45 pm |
Session B (choose one workshop)—“Practical Insights and Tools for Managing Challenging Behaviors,” ”New Challenges—Entering the Teen Years,” “Transitioning from Pediatric to Adult Care and Informal Forum for Adults (16 & over) with UCD.” |
| 5:00 pm |
End of Saturday Session - evening on your own. |
| Sun, July 26 |
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| 8:30 am – 9:30 am |
Continental Breakfast – Join us to network and then enjoy Southern Cal! |
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M., Citrullinemia, Arizona, USA |
"This weekend was a real eye-opener for me. I thought I knew a lot about OTC, but was I wrong! This conference is so valuable, not only with regard to medical research. I will never miss another one. Just being with other parents who have gone through what I have and much more was good for my soul---to talk with others who knew what I was going through....the love and support was incredible." S.R.
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