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UCLA's Ben Howland to help raise funds for Huntington's disease research

The coach's father-in-law died of the affliction, for which there is no effective treatment and cure. Howland is using his celebrity to help fight the genetic disorder.

August 09, 2010|Bill Dwyre

UCLA's Ben Howland wishes he could run a zone trap on this one. He'd like to surround it, smother it until it can't function, wipe it out forever.

But he can't.

It is called Huntington's disease, a terrible affliction with no effective treatment and no cure and something that hovers over his family like a dark cloud.


FOR THE RECORD:
Huntington's disease: In Tuesday's Sports section, Bill Dwyre's column on UCLA basketball Coach Ben Howland's involvement with battling Huntington's disease identified Michael Levine as chairman of UCLA's neurology department. Levine, a professor of psychiatry and biobehavorial sciences, is chairman of the university's neuroscience graduate program. John Mazziotta is chairman of UCLA's neurology department. —

Four years ago, Howland's father-in-law, Arlo Zahnow, died of Huntington's at age 74. At the end, after years of walking with a lurch and gesturing wildly from uncontrollable limbs, Zahnow was unable to even do that. In patients, the brain simply deteriorates to the point where you cannot swallow and you choke to death.

Huntington's was not identified in genetic testing until 1993. Certainly, before that, thousands of people died from it without knowing what they had. The discovery also concluded that it is passed from parent to child.

Some children get it. Some do not. It is like an evil lottery.

The usual time for symptoms to start showing up, according to Curtis Thiede, UCLA research coordinator for Huntington's, is from ages 30 to 45. Howland's wife, Kim, just turned 50. She has no symptoms. She also is uneasy about having this private a matter on public display, but Howland has convinced her that, as he says, "If we are going to help, we have to step out there."

The stepping-out part will occur Aug. 27, when Howland, the Bruins' basketball coach, hosts a fundraiser in Pauley Pavilion called the HDSA LA Hoop-a-Thon. Money raised will go to the Huntington's Disease Society of America. Research is expensive. It is also the only hope to cure this genetic disorder.

For Howland, the frightening scenarios go beyond Kim, to his children, Meredith, 25, and Adam, 23. Meredith, who has Type I diabetes, is a pediatric oncology nurse. Adam will begin law school at Pepperdine in two weeks.

Do not misunderstand. The Howland family does not sit in a dark room day and night, fretting over the possibilities.

"My wife doesn't get up every morning and immediately think about this," Howland says. "At least, I don't think so.

"And no, we have never sat the kids down and talked about it, but they both know they could potentially get it."

The tricky part, according to Thiede, is the testing process. He said that most people don't get tested because they don't want to know. Also, they know that, once they find out and the answer is a positive, nothing will ever change that. They merely have to wait for the symptoms to start, marking the beginning of the end.

Before testing, for those that choose to have it — and it can be done at any age after 18 — there are several tough sessions of counseling. Doctors have to be sure patients understand that, if the answer is yes, there is nothing they can do. That diagnosis will not change and, pending a research breakthrough, they will die a horrible death.

"These things tend to tear families apart," Thiede says. "As soon as you find out, everybody around you is an instant caregiver. If you are diagnosed, it becomes like a ticking clock. And because it is passed along by a family member, many have already seen their parents go through this."

One can only imagine the torture of decisions between two young people, wanting to get married, one of them from a family with Huntington's in their background.

As close as he is to UCLA's program as its research coordinator, Thiede says he has never been in the room when somebody is told he or she is a positive.

"I can't imagine being there," he says.

Thiede estimates there are 30,000 diagnosed, active cases in the United States. He says that recognition of Huntington's is still so new that homeless people are occasionally picked up by police because they are lurching and stumbling and have slurred speech.

"They may look drunk," he says, "but they have HD."

Howland first learned of his father-in-law's condition more than a dozen years ago, when he was coaching at Northern Arizona. He admits that the realization of all that it was, and all that it could mean, has come gradually.

The best slap in the face may have come several years ago, when Howland got on a plane and sat down next to Michael Levine, then and now chairman of UCLA's neurology department. They didn't know each other, but somehow, Levine knew of Howland's family connection to HD.

"In two hours on that plane," Howland says, "he pulled me in, explained things."

Levine will be one of the speakers at the Aug. 27 fundraiser. He won't say anything about fastbreaks and double screens, but his message will certainly be about winning. A nice thing would be if he had a big audience, and that can be achieved by calling Natalie Carpenter at or e-mailing her at ncarpenter@hdsa.org.

Those who attend ought to give Howland a pat on the back. He's a tough guy, but he blew his cover a bit on this one by allowing his celebrity to be used to this good end, despite its personal nature.

For one night, Aug. 27, it'll be old softy Ben.

Then, it's back to wind sprints.

bill.dwyre@latimes.com

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