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Dublin, Ohio was the site of the National Coalition for PKU and Allied Disorders Metabolic Conference on the weekend of May 3, 4, and 5. Attendees gathered at the beautiful Embassy Suite Hotel for a jam-packed conference, starting with reception on Thursday evening, and finishing off with a question and answer session with a professional panel on Saturday afternoon.

Friday morning and afternoon were devoted to breakout sessions for the following diseases: phenylketonuria (PKU), MSUD, organic acidemias (OAs), fatty oxidation disorders FODs, homocystinuria (HCU), and tyrosinemia (TYR). On Friday evening from 7 p.m. until 10:30 p.m., there were talks on different aspects of newborn screening with a question and answer time at the conclusion. On Saturday, the entire group came together in the large ballroom for back to back lectures on the following topics:

  1. Self Esteem Issues of A Child with an Inborn Error of Metabolism
  2. The Prevalence of ADHD in Metabolic Disorders
  3. Federal Legislation for Metabolic Formulas
  4. Universal Newborn Screening, It's Time Has Arrived!
  5. Obtaining Metabolic Formula Reimbursement
  6. Gene Therapy Update

There was a great deal of sharing and interacting among the families. For many of the families it was their first opportunity to attend a conference like this. There were approximately 320 people (families and professionals) present from thirty-one states and seven foreign countries. Twenty-one metabolic disorders were represented. Eight MSUD families attended.

Between sessions, the participants were able to enjoy the pool and other amenities of the hotel. Terrific low protein food was provided for those on low protein diets. Vendors from several companies displayed the latest in low protein foods and medical foods for low protein diets.

The organizers of this event included: Trish Mullaley, Massachusetts, who is the President of the National Coalition for PKU and Allied Disorders; our own Sandy Bulcher, Ohio, who is Vice-President of the Coalition; Kathy Stagni, Minnesota, from the Organic Acidemia Organization; Cay Welch, Pennsylvania, representing the International Organization of Glutaric Aciduria; Teresa Cornette, Kentucky, Fatty Oxidation Disorders; Karen Lewis, Massachusetts, homocystinuria; and Jennifer Hebberer, Maine, Tyrosinemia.

We realized that despite our differences, there is much that we share in common. We can, and should, work together to achieve our common goals. The next conference will be held in Minnesota. Check the msud-support.org web site for updates.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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