On Saturday, June 21, the Oklahoma Medical Research Foundation will host the Huntington’s Disease Oklahoma Family Conference. The conference, which is sponsored by the Oklahoma Chapter of the Huntington’s Society of America, will be Oklahoma’s first statewide Huntington’s gathering since 1999.
Huntington’s disease is a fatal hereditary brain disease for which there is no known treatment or cure. The conference will educate Huntington’s disease sufferers and their families about a wide variety of disease-related issues, including the latest research, caregiving and legal developments. Organizers expect Huntington’s sufferers and their family members from across the state to attend.
“The idea is to bring together people whose lives are affected by Huntington’s disease and let them know they’re not alone,” said Kenneth Hensley, Ph.D., an OMRF scientist who researches Huntington’s and other neurological diseases and is also one of the conference organizers. “Through a network of families, caregivers and medical and legal professionals, we are working to diminish suffering and increase awareness and funding of this debilitating disease.”
There are about 30,000 known cases of Huntington’s in the U.S., including more than 300 in Oklahoma. Oklahoma native Woody Guthrie died of Huntington’s disease. The disease usually manifests itself between the ages of 30 and 45, starting with mood swings, clumsiness and involuntary twitches and eventually progressing to the point where a person cannot walk, speak, swallow or care for him or herself. Death usually results from complications such as choking, infection or heart failure.
Because scientists have identified the exact genetic defect responsible for Huntington’s, there is a genetic test that will predict — with 100 percent accuracy — whether a person will contract the disease. However, because there is no cure or treatment and significant negative insurance and employment ramifications to a positive Huntington’s test, 90 percent of those at risk for the disease opt not to be tested.
“In principle, this is a very treatable disease because we know its genetic cause,” Hensley said. “But right now, it’s as if we know who the killer is, but we haven’t yet figured out how to stop him.”
Conference speakers will include University of Oklahoma Health Sciences Center geneticist Dr. John Mulvihill, State Genetics Education Coordinator Amber Nolen, Hensley and Dr. Elizabeth Penziner of the University of Iowa, who is recruiting patients to participate in a study examining the onset of Huntington’s. For more information, please call (405) 271-7569.
