Screening Education Provided At Recent Conference on Disabilities in Atlanta
The second annual World Congress & Exposition on Disabilities (WCD) was held in Atlanta, Georgia, September 28-30, 2001. It is an annual international conference and trade event. The WCD is intended to educate, inform and provide a useful exchange of ideas for persons with disabilities and special healthcare needs and those involved in their care and development. More than 7,500 individuals attended this year’s conference. Pediatricians, parents, special education teachers, advocates and many more attended the educational workshops and visited the more than one hundred displays in the exhibit hall.

The National Coalition for PKU and Allied Disorders was one of the exhibitors at this year’s WCD. The National Coalition allowed the FOD (Fatty-acid Oxidation) Family Support Group, Genetic Alliance, International Society for Glutaric Acidemia, Mercy Medical Airlift, Organic Acidemia Association, and Save Babies Through Screening (Tyler For Life Foundation) to be represented at their booth as well. Cay Welch from the International Society for Glutaric Acidemia, Marcia Dunahoo from Save Babies Through Screening and Tera Mize also from SBTS were available at the display to greet conference attendees and to answer questions about newborn screening and related disorders.

Newsletters, fact sheets, and educational brochures were available from all the participating organizations at the booth. Supplemental newborn screening kits were provided by Baylor Medical Center for the display and were distributed to interested persons. In all over 250 supplemental newborn screening kits were handed out. The display sparked many discussions about newborn screening and the disorders detectable through it.

Some visitors received a double dose of newborn screening information as Sigma-Tau Pharmaceuticals also provided information on NBS and some of the detectable disorders. They also provided supplemental newborn screening kits from NeoGen Screening to visitors of their booth. The Sigma-Tau display was located just around the corner from the National Coalition booth.

Educational workshops were held the entire weekend. Several workshops were held on newborn screening related disorders including sessions on genetic disorders, genetic counseling, metabolic disorders, mitochondrial disorders and sickle cell disease.

A 2-part newborn screening workshop was held as well. Speakers at the newborn screening session included Dr. Piero Rinaldo from Mayo Medical Laboratories and Dr. Donald Chace from NeoGen Screening. Topics in the newborn screening sessions included results of current post mortem screening, the need for more disorders to be screened for, ethical issues related to legislative mandates for screening, and outcomes of affected children when detected by screening. Dr. Rinaldo and Dr. Chace presented strong cases for expediting implementation of comprehensive newborn screening.

An open forum question and answer session concluded the conference with a panel of experts lead by Mr. Joe Valenzano, President of Exceptional Parent Magazine.

The World Congress & Exposition on Disabilities will be held next year in Orlando, Florida. You can find out more about the WCD by visiting their website at www.wcdexpo.com or by calling toll free 1-877-923-3976.

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