About the National Urea Cycle Disorders Foundation

NUCDF 2002 FAMILY CONFERENCE A SUCCESS!

By Tresa Warner, NUCDF 2002 Conference Coordinator

Orlando, Florida proved to be a perfect location for our NUCDF 2002 Family Conference. Parents, children and medical professionals from around the globe came together to participate in the 2002 Annual NUCDF Conference held at the Grosvenor Resort in June.

The conference began on Friday night with a reception for our families. Everyone enjoyed great food and drinks, and became reacquainted with UCD friends and families. Because of the magical location of the conference, NUCDF wanted to surprise our little members with a visit from Mickey and Minnie. The children’s faces illuminated the room when they saw Mickey and Minnie. Each child greeted their heroes and smiled for the camera. Friday night was a lovely evening full of excitement and anticipation of the next two days.

On Saturday morning, everyone gathered outside the conference room to visit, pick up information, and sample lo-pro foods from the exhibition tables. Our NUCDF registration table was loaded with handouts on UCD’s, lo-protein food providers and the latest medical information. After the continental breakfast families got set to hear from the leading professionals on Urea Cycle Disorders.

The agenda was:

Mark Batshaw, M.D., Geneticist, Developmental Pediatrician Chief Academic Officer, Children’s National Medical Center, Washington, D.C., Spoke on "Effects of UCDs and Hyperammonemia on Brain Function and Behavior"

Shideh Mofidi, M.S., R.D., presented "Nutritional Issues and Management in patients with UCD."

Marshall Summar, M.D., Geneticist, Vanderbilt Medical School, and Nashville, TN, reported on "CPSI Research: Impact on the urea cycle and beyond"

Stephen Cederbaum, M.D, Geneticist, UCLA Medical Center, Los Angeles, updated "Newborn Screening and Mouse Model: Newborn screening and animal model for UCD - Their role in the future."

Brendan Lee, M.D., Geneticist, Baylor College of Medicine, "Update on helper-dependent adenoviral gene therapy in the UCD and new clinical trials for ASA."

Saturday’s highlight for the children was the provided daycare room stocked with games, crafts, and special friends. The children met their parents and doctors for lunch in the resort dinning room. The day concluded with exhausted parents full of the most current information and research on UCDs. Families had many options for the evening: DownTown Disney, visiting on a Disney Theme Park, or turning in early.

Sunday morning came in a flash and everyone stopped by for a quick breakfast before heading home. How fast the three days went! Families connected with a network of parents, children, and doctors all dedicated to providing the best possible care for our special children.

Thank you to everyone for a rewarding experience. I truly enjoyed organizing the 2002 conference and hope for NUCDF to return to Florida soon.

For more information on the presentations please contact Cindy LeMons or Tresa Warner for a video.