Taking Action for Amino Acid Disorders 2012 Fun Run/Walk
Fred G. Bond Park, Cary, NC
Saturday, April 14, 2012
This event is being held by a group of dedicated NC families affected with inherited metabolic disorders in partnership with the Children’s Promise Program of the NC Children’s Hospital. Inherited metabolic disorders are rare genetic disorders and a majority of these individuals in NC are treated at the Pediatric Genetics Clinic at UNC-Chapel Hill. Examples of some of these disorders include phenylketonuria (PKU), maple syrup disease (MSUD), organic acidemias isovaleric acidemia (IVA), propionic and methylmalonic acidemia (PPA, MMA), urea cycle disorders (UCD). Funds raised from this event will provide:
Emergency supply of special medical foods which are essential for normal growth, development and optimum outcome of the disorder
Special low protein foods such as pastas, breads, rice etc (which are six to eight times more expensive than similar store bought foods) to children and families who have financial hardship
Scales for weighing the medical foods and medications, lancets, resources such as Food Lists, cook books and memberships to parent support national organizations
Help the Genetics and Metabolism Clinic to continue to publish the "Metabolic Newsletter"
Annual events for families to build social support
Many inherited metabolic disorders are effectively diagnosed through newborn screening.
