Drug from suburban company fuels hope for Huntington's disease cure

Xenazine was once considered an "orphan drug," one that big pharmaceutical companies abandoned because they didn't think it'd be profitable enough.

But the Deerfield-based pharmaceutical company Lundbeck saw the drug's potential to help the 30,000 people in the United States - and the 1,500 people in Illinois - who suffer from Huntington's disease.

Last year, the medicine was made available in the U.S., and they've helped Huntington's patients control the jerky, involuntary movements caused by the disease.

"The strategy and focus of the company is to focus on these underserved, niche diseases," said Dan Brennan, general manager of Lundbeck's neurology business unit.

He said they hope to soon produce Clobazam, a drug to help a rare type of childhood epilepsy.

Huntington's is a relatively new disease, discovered in 1993. It's a hereditary, degenerative brain disorder that slowly diminishes a person's ability to walk, think, talk and reason.

There's no cure, and eventually a person with HD will become totally dependent on others and will die within 10 to 15 years of the onset. Because the disease rarely shows itself until middle age, people don't realize they have passed on the disease to their children. It's rare for doctors to test for the disease because it's fairly uncommon.

Right now, there is no cure for Huntington's disease. So to raise money for research, more than 100 Lundbeck employees held a Hoop-A-Thon in their parking lot Friday.

It was a prelude to the main fundraising Hoop-A-Thon this Saturday, April 24, at Maryville Academy in Des Plaines. All proceeds will be donated to the Huntington Disease Society of America.

"The event is as much a family-friendly event as it is a fundraiser," said John Cuccinato, a Lombard father of two who heads up the HDSA's Illinois chapter. He lost his father to Huntington's and three of his siblings have been diagnosed with it.

"You don't need to raise money in order to participate, you can just come and have fun," he said.

This weekend's Hoop-a-Thon will utilize two gyms. One will host the actual Hoop-A-Thon, where people who have collected pledges will see how many free throws they can shoot in three minutes. The other gym will be the KidsZone, filled with activities like a moonwalk, air slides, face painting, a caricature artist, games, crafts, lower baskets for kids to shoot hoops, and a silent auction and raffle.

This is the fifth year the HDSA has hosted a local Hoop-A-Thon, and to date they've raised $76,000, Cuccinato said. They hope to top the $100,000 mark with this year's event.

Charlotte Rybarczyk, of Rolling Meadows, said her sister has been diagnosed with Huntington's, and until she started taking Xenazine, she was so "wiggly" she couldn't sit through a movie or even a TV show.

It's those types of things that Huntington's sufferers must live with, and it's these types of quality of life issues that the Hoop-A-Thon's proceeds will help.

"Everyone talks about a cure ... but we also have to help these families until a cure is found. The funds become so important for all of those reasons," Rybarczyk said. "You don't have to shoot hoops. There'll be food and there'll be stuff for kids to do, and there's an auction. Something for everyone. And you can be helping a good cause at the same time."

<p class="factboxheadblack">Hoop-A-Thon 2010</p>

<p class="News"><b>When:</b> 10 a.m. to 3 p.m. Saturday, April 24</p>

<p class="News"><b>Where:</b> Maryville Academy's south gymnasium, 1150 N. River Road, Des Plaines</p>

<p class="News"><b>Cost:</b> If you want to shoot hoops, but don't have any pledges, there is a $10 registration fee. The fee is waived if you collect $10 or more in pledges. All shooters will receive a goody bag that includes a T-shirt. Access to the KidsZone is $10, and includes unlimited access to activities and lunch.</p>

<p class="News"><b>Info:</b> <a href="http://hdsa-il.org" target="new">hdsa-il.org</a></p>