9th Annual Trivia Night to benefit Batten disease research

Friday, February 24, 2012 | 6:16 p.m. CST; updated 8:24 p.m. CST, Friday, February 24, 2012

COLUMBIA — To help a student with a fatal disease, Lange Middle School is holding its 9th Annual Trivia Night and Silent Auction at 5:30 p.m. Friday.

The event raises money to benefit the Heart of Missouri Chapter of the Batten Disease Support and Research Association. Batten disease is a rare degenerative neurological disease that affects 18-year-old Austin Hein. He is the only person in mid-Missouri to have the disease, his mother, Lugine Hein, said.

Although Austin Hein is technically in 12th grade, he is a student at Lange, which teaches only sixth and seventh grades. Lugine Hein said she and her husband decided to continue their son's education there because of the "wonderful teachers and staff who continue to work with him."

As a result, the family became more involved at Lange and organized the first Trivia Night and Silent Auction in Feb. 2004 after hearing about one that had been organized in Springfield.

"It is a different kind of fundraising," Lugine Hein said. "And we thought we could do it ourselves without lots of help; we want people to participate by attending rather than by helping to organize it."

The event was a success, bringing in nearly $10,000 and averaging about $7,000 each year since then. Nearly 240 people attend each year.

Some money is raised through a silent auction, small side games, donations and food sales. But most of the money comes from a participation fee of $10 per person. Participants can sign up as teams of eight, or individually, in which case they are placed on a team. 

The Heins create new trivia question categories each year and research questions to fill them; they write 100 questions which are broken down into 10 rounds. The top three teams win prizes at the end.

"Teams go all out and create themes for themselves," Lugine Hein said. "They make T-shirts and decorate their tables. It adds another fun element to the evening."

One time, a group of team members dressed up as characters from the game Clue. Another team had a fake bonfire in the middle of its table, and team members went as s'mores.

Chris Kellogg, morning radio host at 101.5 KPLA, has been the Guest Quizmaster for the past five years. He met the Hein family at church. 

"I wanted to donate my time to help," Kellogg said. "It is really good, competitive fun, and the family works so hard to get people involved. It is cool to see so many businesses and people help, especially since they don't know about the disease."

Batten disease affects only two to four of every 100,000 births. It is an inheritable disease that comes from a recessive gene, meaning both parents must carry it and pass it on to their child for the disease to manifest itself.

According to the Batten Disease Support and Research Association website, when both parents carry one defective gene, each of their children faces a one in four chance of developing the disease while also facing a one in two chance of inheriting one copy of the defective gene.

Lugine Hein has two other sons who are older than Austin, but neither have Batten disease. Although, she said, one of the sons is a carrier of the defective gene.

"I know families where all or some of the children have the disease," Lugine Hein said. "We were blessed to only have one."

It is fatal, and signs of the disease are typically evident in childhood, but one form of the disease occurs in adulthood. It usually begins with vision problems and seizures, and eventually, it leads to an early death.

"There is currently no treatment or cure; we can manage the seizures and provide daily care, but there is no way to affect the disease at this point," Lugine Hein said. "I know there is a cure, we just need to get the right research."

The money raised from the event will go toward funding this research, as well as helping to provide support to families who are affected by the disease. 

"Since it is a fairly rare disease, families need that support," Lugine Hein said.

The community at Lange has tried to help support the Heins. The students held a Penny War this past week that raised an additional $700 to donate along with the money raised at the event.

"We really appreciate all of the support of our friends. It means so much to us," Lugine Hein said.

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