Our Center takes aim at Huntington's disease
http://www.ocregister.com/articles/disease-95820-ocprint-alzheimer-people.html
http://seattletimes.nwsource.com/html/health/2013439384_hunt18.html and
http://www.bradenton.com/2010/11/12/2733350/our-health-uci-center-takes-aim.html
Neurodegenerative genetic disorder affects coordination and cognitive decline.
By Jane Glenn Haas - The Orange County Register November 10, 2010
Not much has been publicized about Huntington's disease. Huntington's disease is "a progressive neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. And if you have seen adults with involuntary writhing movements you know what a tragedy it represents. There is no known cure. It is fatal. People with symptoms usually live about 15 years. And it is known to affect about 30,000 people nationally.
"But there are probably many more people who are undiagnosed," says Dr. Frank LaFerla, director of the Institute for Memory Impairments and Neurological Disorders at UC Irvine (UCI MIND). "In fact, we think there could be two or three times the number we currently recognize," he says.
Question: Still, the number of people with HD is considerably fewer than Alzheimer's disease, which affects 5 million Americans. Why include the study of HD when your center focuses on Alzheimer's?
Answer: Since I became director of the institute, it has been my strong belief that we can really learn and apply what we learn from these rare disorders to people with Alzheimer's. Even though HD differs from Alzheimer's, Parkinson's or Lou Gehrig's disease, a lot of cellular and molecular pathways are shared by all. So what we learn from one can be applied to another. Each disorder is marked by brain inflammation, oxidative damage, buildup of misfolded proteins.
Q: You launched a "Frontiers of the Mind" lecture series last month at UCI to talk about local research on various memory-related disorders and conditions. And you started with HD. Why?
A: The series is designed to link research we are doing here at UCI MIND with the larger community eager to learn about topics affecting them and their future. Upcoming lectures will delve into the relation between Down syndrome and Alzheimer's disease and head injury as a risk for dementia.
Q: Your faculty member, Leslie Thompson, was part of an international consortium that identified the HD gene and talked about her research. Dr. Neal Hermanowicz, who specializes in neurology, discussed the full service clinic now operating at Gottschalk Medical Plaza on the campus. But the presentation by TV journalist Charles Sabine brought tears to everyone's eyes. Am I right?
A: Absolutely. He showed us examples of how he was part of a group they tried to blow up in Iraq. Another TV team he was on was shot on in Afghanistan. And he was held prisoner in Bosnia. But as he said, none of that - including being a prisoner and being threatened by someone holding a grenade to his head - frightened him as much as discovering he has the gene for HD. His father had the disease. His brother, who is only a few years older, already has the disease. And it is 100 percent inevitable that he will get it.
Unlike Alzheimer's, Parkinson's and Lou Gehrig's diseases, which tend to strike later in life, HD strikes at the prime of life, when the patient is at peak earning power, has a young family perhaps. Sabine has a 2-year-old daughter and it is unlikely he will do the father-daughter dance at her high school graduation.
Q: There is a Huntington Disease Society of America. We know the impact HD and other diseases have financially. You said in a couple of decades it will cost the U.S. $1 trillion a year just to manage Alzheimer's patients as boomers start to age. So should we be spending more money on research now?
A: The government spends less than $500 million on Alzheimer's research today, compared to $600 billion on cancer research.
Q: So lobbying groups are not effective?
A: What you need is advocates and famous people. Ironically, the best thing that happened to Parkinson's research is Michael J. Fox who speaks out as often as possible about the impact of the disease on his life.
Jane Glenn Haas writes for The Orange County (Calif.) Register. E-mail her at jghaas@cox.net<mailto:jghaas@cox.net>
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FYI - Patients and families seeking neurological and psychological support for
Huntington’s disease can visit UCI Medical Center’s Huntington’s
Disease Clinic. The clinic is located on the UC Irvine campus in the city of
Irvine, operates the fourth Friday of every month by appointment. Appointments
can be made by calling the UCI Neurology Call Center at 714-456-7239.
Neal Hermanowicz, M.D. Movement Disorders Neurology
Huntington's Disease Clinic
UC Irvine Gottschalk Medical Plaza
2100 Medical Plaza Drive, Irvine, CA 92697
Phone: 1-877-824-3627
Appointments: 1-949-824-0190