NUCDF Conference Fireworks at the Washington Monument




Save the Date!
Join us for the

Focus on the Future
2009 NUCDF Annual Conference
July 24-26, 2009

The Hilton Pasadena
168 South Los Robles Avenue
Pasadena, CA 91105
(626)577-1000 • (800)445-866

IMPORTANT!! EVENT LOCATION INFORMATION:  
Our Welcome Reception at 6:30 pm on Friday, July 24 will be held on the beautiful grounds of the NUCDF offices, located at 75 S. Grand Avenue, Pasadena, CA, not at the Hilton Pasadena. The two Friday workshops, Low-Protein Cooking at 1:00 pm (preregistration required, limited to 20 participants) and Dealing with School Issues Workshop at 3:30 pm will also be held at the NUCDF office facilities.

Registration for the Conference is required for all attendees. Conference Registration Packets have been mailed to NUCDF members.  For more information or for nonmember registration, please contact NUCDF at (626)578-0833. REGISTER ONLINE or download the REGISTRATION PACKET.

Shuttle to Friday Events: The Hilton Pasadena is approximately 1.5 miles from the NUCDF offices located at 75 S. Grand Ave., Pasadena, CA.  Complimentary transportation from the Hilton to the NUCDF offices will be available on Friday, July 24 via Hilton Shuttle and private NUCDF van shuttle.  Some families may wish to carpool on their own.  If you wish to utilize the shuttle service to take you from the Hilton to the NUCDF office location for the Friday workshops (preregistration required) or the  Welcome Reception at 6:30 pm,  please make a shuttle reservation by calling Argie Mandakas, NUCDF  Member Services, (626)578-0833 or email argie@nucdf.org by July 10, 2009.


HOTEL ACCOMMODATIONS — Reserve Early!
NUCDF has reserved a block of rooms for our members at a special reduced rate of $139.00/night. A limited number of refrigerators are available by special request by contacting the NUCDF office at (626)578-0833.  The deadline for reservations is June 15, 2009, but please book early  — once our block is full, the special rate will no longer be available. The Hilton will honor the rate from July 21-29 for families wishing to extend their stay in Southern California.  When making reservations by phone or online, you must request the group code NUREA, in order to obtain our special room rate.

HOTEL RESERVATIONS and Information:  1(800)445-8667, ask for Group Reservations, request group rate code NUREA.  Reservations can also be made online. Click Here

Childcare Pre-Registration
Childcare is available on Friday, July 24, 1:00 pm-5:30 pm for those families registered for Friday workshops only.  Childcare is available on Saturday, July 25 from 7:45 am-12:00 pm and from 1:30 pm-5:30 pm for all conference families.  We will not be able to provide care at the conference without preregistration. Parents will be responsible for administering any medications or food.  If your child has any special needs or will need one-on-one care, please indicate on the registration form so that we can accommodate all children appropriately.  To insure the safety of all our children, please DO NOT bring your child to childcare on the day of the conference if your child has a viral illness or has been exposed to one.  For questions regarding childcare, contact Argie Mandakas at (626)578-0833, or argie@nucdf.org

Attire: Casual or business casual attire is appropriate for the entire conference.

Special Diet Information: Regular and low-protein foods will be available at our evening Welcome Reception on July 24, the continental breakfast and luncheon buffet July 25.  All other meals are “on your own” at the hotel or area restaurants.

Area Attractions
The Hilton Pasadena is located within walking distance of Old Town Pasadena restaurants and shops, and one block from Paseo Colorado, Pasadena’s premier shopping and dining district.  The Hilton Shuttle provides complimentary first-come transportation within a 3-mile radius of the hotel. Hotel facilities include on-site restaurant, car rental service, pool and fitness center.  The Hilton is 3 miles from KidSpace Museum, the Norton Simon Museum and Huntington Library, 10 miles from Downtown Los Angeles, and within easy access to the Los Angeles Zoo,  Autry National Center of the American West, Universal Studios and other major Southern California attractions.

Airports
The Hilton Pasadena is located 20 minutes from Bob Hope Airport in Burbank, CA, and 50 minutes from Los Angeles International Airport (LAX). Several shuttle services and car rentals are available at both airports (reservations recommended).


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

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

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  
8:30 am – 9:30 am Continental Breakfast – Join us to network and then enjoy Southern Cal!

 

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.