Yorktown Girl Battles with Rare Childhood Illness

From bowling to baseball, from sitting in a classroom to learning how to text, Lisa Marie Hodes has the same experiences many 10-year-olds have growing up in 2011. Those experiences, which may seem simple and rudimentary for most… Read More

Kiley Smiles Through Rigors of Rare Disorder

Like many other families, the Andrascos of Lake Zurich enjoyed their Christmas holiday. Their 11-year-old son Ryan and nine-year-old daughter, Kiley enjoyed their time off from school, although Kiley likes school so much that she was happy to return after… Read More

Updates on the AHC Research at the University of Utah, April 2011

Under the direction of Dr. Kathryn Swoboda, The University of Utah Pediatric Motor Disorder Research team has been busy working on several current and upcoming projects for AHC. The clinical trial of Sodium Oxybate (SO) is now in… Read More

Updates on AHC Research at the University of Utah June 2010

The Pediatric Motor Disorders Program at the University of Utah currently has 53 AHC families enrolled in our online registry! The AHC Registry allows us to quickly and efficiently contact families in the future with information about new… Read More

July 2007 Research Update

Thanks to the extraordinary efforts of the parents of children with AHC, we are moving ahead in our research program to identify the causes and potential treatment of AHC. In the last three years, we have focused our… Read More

Research Update: March 2006

Over the past few months we have made significant new progress in evaluating “candidate genes” which may play a role in causing AHC. Candidate genes are those which are considered more likely to cause the disease for a… Read More

Research Update: April 1st – Oct 30th, 2005

Over the past several months we have made continued progress in evaluating various gene candidates which may play a role in AHC. I will highlight this progress in the order they were specifically presented in the initial grant… Read More

Medical Update

by Dr. Kathryn Swoboda As everyone is probably aware from recent news coverage, the human genome project is nearly completed. Regarding AHC specifically, as you probably know by now, we cloned the translocation breakpoint nearly a year ago,… Read More

Research Update and New Directions, AHC Gene Project 2002

February 2002 by Dr. Kathryn Swoboda We would like to take this opportunity to update you regarding a number of exciting developments in the AHC gene project. The work on finding the gene or genes causing AHC has… Read More

Research Update (1998)

by Dr. Louis Ptacek, M.D. Associate Professor Dept. of Neurology, Human Genetics University of Utah Salt Lake City, Utah A neurologist at Children’s Hospital in Boston, while working a couple of years ago with Bruce Korf, saw a… Read More