The New York Times-20080127-Students Wage War on a Disease

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Students Wage War on a Disease

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A FIRE blazed in the stone fireplace in the foyer of the Oheka Castle here. Two young women dressed in floor-length gowns stood at the top of the Grand Staircase, welcoming guests to a fund-raiser for research into amyotrophic lateral sclerosis, or A.L.S.

Partygoers crowded the ballroom, buying raffle tickets for items that included a vacation in Tahiti, and considered whether to bid in a silent auction for the autographed photo of Roger Federer or dinner and tickets to a taping of The Colbert Report. A band played in the Terrace Room, while the actress Edie Falco caused a stir at the bar.

It looked like any professionally run, high-end fund-raiser. But the Jan. 10 event, called A Midwinter Night's Dream, was conceived, planned and executed by Northport High School students for David Deutsch, a biology teacher who has A.L.S.

What started in 2004 as a basketball tournament to raise money for Mr. Deutsch, 39, has turned into such a passion for some students that it is shaping their career choices, and the school and community have embraced the effort. The January benefit raised $250,000, bringing the total to date to $722,000.

Students vie to get onto the fund-raising committee, run by a chemistry teacher, Don Strasser. Kate Macina, 16, a junior, was one of 70 students who competed this school year for 18 spots on the committee. This is what's important, she said. Not whether you get a 95 on a test.

Students who get involved often become hooked. Several committee alumni came home from college to help out, and seven members of the original committee have been so inspired that they are planning their college and postcollege careers accordingly.

Three are studying science so they can eventually perform A.L.S. research; two intend to become event planners; one is majoring in public policy to affect the allocation of money for A.L.S. research; and another is following in Mr. Deutsch's footsteps to become a teacher. Four students spent a summer helping with research at different institutions.

Michelle Pernice, 20, a St. John's University sophomore studying pharmaceutical science, became involved in the fund-raiser in 11th grade. It's totally changed my life, she said. It defines my life.

She said she wants to do A.L.S. research and help develop drugs to combat the disease, which affects nerve cells in the brain and the spinal cord. Currently, there is no cure for A.L.S., and treatment focuses on relieving symptoms and slowing its progression.

Mr. Deutsch, who is married with two sons -- Andrew, 7, and Ethan, 4 -- had always been active; he gutted and rebuilt his West Sayville home, was an expert sailor and dabbled in flying. But he began having symptoms in mid-2003, and A.L.S. was diagnosed in February 2004. He told his students days later.

Another Northport district teacher, Chris Pendergast, was stricken with A.L.S. more than a decade earlier, but his disease has progressed more slowly. Shaun Hager, 20, now a premed student at the University of Delaware, said, We thought we should do a fund-raiser and that the school would rally around us.

They enlisted Mr. Strasser and held a basketball tournament fund-raiser that June. Supplementing the basketball with carnival games and paper basketball hoops costing $1, they raised $26,000.

That summer, Mr. Strasser took 40 students to the Robert Packard Center for A.L.S. Research at Johns Hopkins to deliver their check. They told us what our money was going for, Mr. Hager said. We realized that the $26,000 was great, but how much can that get?

Mr. Deutsch's wife, Dorothy, 36, and the students brainstormed, and A Midwinter Night's Dream was born.

Mr. Deutsch, who had to quit teaching in February 2005, breathes using a mechanical device and can no longer speak. He communicates using an infrared light that is aimed at a reflecting dot on his eyeglasses, which he directs with imperceptible head movements to effectively type on a computer. And a computer-generated voice reads the text.

With this disease, it is very difficult to maintain your will to live, he said at his home this month. Having the students' support is a tremendous boost to my mental strength.

Nearly a dozen students e-mail him from college and visit during school breaks. This month, nine students spent an afternoon in the Deutsches' cozy kitchen/dining room.

We enjoy hanging out with him, said Sarah Pattison, 18, a Villanova freshman who volunteers at A.L.S. Hope Foundation in Philadelphia and wants to pursue A.L.S. research. He has such an incredible outlook.

The students kept the atmosphere upbeat, talking about college and joking about their transgressions over winter break, but eventually the joviality subsided and Mr. Deutsch became emotional.

It comforts me to know I have had a lasting, positive impact on so many people, he said. When I die, I'll know there was a greater good to my life.

[Illustration]PHOTO: HOMEGROWN EVENT: David Deutsch, a teacher who has A.L.S, with Northport High School alumni, from left, Chris Lynch, Meaghan O'Gara, Shaun Hager, Al Lucia and Jon Foster on Jan 10. (PHOTOGRAPH BY PHIL MARINO FOR THE NEW YORK TIMES)