Ohio Conference Draws People from Thirty States and Seven Other Countries

By Virginia Schuett

From the Fall 2001 issue of National PKU News

On May 4-6, 2001 more than 325 people from all over the U.S. and from as far away as Australia, Canada, Brazil, Germany, Iran and Ireland came together in Dublin, Ohio for a superb weekend of talks and sharing. The National Coalition for PKU and Allied Disorders hosted the remarkable conference, skillfully organized by Trish Mullaley (PKU parent and President) with assistance from parents of children with other disorders. On Friday, there was a daylong conference designed to consider specific issues unique to each major metabolic disorder represented (PKU, maple syrup urine disease, organic acidemias, homocystinuria, tyrosinemia, and fatty acid oxidation disorders). A Saturday meeting followed, where excellent speakers addressed concerns mutual to all of the disorders, such as gene therapy. Besides the formal presentations, families of children with nearly 20 different metabolic disorders mingled freely with each other and with professionals, all happily sharing their experiences and knowledge. While it is impossible to capture in a newsletter the lively atmosphere of the meeting, here is a summary of three interesting topics that were presented.

 


Last update: 12/01
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