ALS Alert Newsletter | March 2010

Coming Full Circle

Chris Lynch had no idea, in third grade, how knowing someone with ALS would change his life. Now into full-bore grassroots fundraising, he could write a guidebook for others in his shoes.

When he was 8, Chris Lynch had his first brush with ALS in the person of his third-grade teacher, Christopher Pendergast, diagnosed two years earlier. “Mr. Pendergast was wonderful in the classroom,” says Lynch, now 23, “just the best.”

Because Pendergast has a rare, slow form of the disease, Lynch and classmates in the Long Island town of Northport had time to learn firsthand about ALS in a way most children wouldn’t. When, a few years later, ALS struck again—this time affecting David Deutsch, a beloved Northport High teacher—it came while Lynch and his friends were students there.

That second time, there was something about the bond that students forge with good teachers, combined with the passionate idealism teenagers can hold that got heated white-hot in the crucible of having a fatal disease. “Then everything came together,” Lynch says, “to produce this incredible, incredible thing.”

Lynch is referring to “A Midwinter Night’s Dream,” now a gala event held annually by Northport students, parents and the community to fund ALS research. Newsday called this a “million dollar miracle.”

In the six years since Lynch was a Northport High student, “Dream” has raised more than $1.5 million. This year’s gala alone produced almost a third of that. The Packard Center became the first recipient of the high-schoolers’ largesse, which six years later still continues to support Packard’s search for a cure , as well as others’ efforts.

But the proceeds go beyond money. Lynch, still very much involved in “Dream” even though he’s now teaching first grade, tells why it isn’t your usual fundraiser.

ALERT: How did you get started?

CHRIS: More quietly than you’d think. A couple of friends needed Honor Society hours and we were trying to think of projects. There were six of us. We pitched the idea of a basketball tournament to our advisor, Don Strasser, who helped us settle on ALS as our cause. We’d always wanted to do something for our two teachers—that hit close to home—we just didn’t know what.

Luckily, most of us were together in AP chemistry, which opened up a whole month at the end of our junior year when the exam was over—things always seem to open for this—and 16 of us had time to plan.

ALERT: So you began with…

CHRIS: “Hoops for ALS!” A basketball tournament. We were hugely excited when it was a success. We’d expected $1,000, maybe, but got $32,000! That went to the Packard Center at Johns Hopkins because Hopkins was where Mr. Deutsch had been diagnosed. He was very impressed by what he’d seen there.

ALERT: Then what?

CHRIS: By the summer of senior year, we were hooked. We wanted to raise more. Some of us would hang together, trying out ideas, and when Mr. Strasser sent us a list of the top 100 businesses on Long Island to call, we got right on it.

ALERT: I gather you weren’t very good.

CHRIS: We spent two solid days on the phone and got nothing. But we got better. Harold Garrecht, who heads a large brokerage firm in Long Island heard about our embarrassment. He invited us in and put us on the spot pretty fast. He asked us, Why’d you get involved? I still remember how much heart my friend Meghan put into her answer. Then he said: Okay. Give me your pitch. Tell me what you say on the phone.

As teenagers, we almost fell over afterward at the donation he promised. But more than that, Mr. Garrecht said he wanted to raise our fundraising to a new level. And he has. Every year, he’s taken our students under his wing.

ALERT: Literally! He bought your group a table at Wings Over Wall Street, right? The Times Square granddaddy of ALS galas?

CHRIS: Yes. And right then we decided to pattern ourselves on Wings. We pitched in and held our first dinner and silent auction only three months later. It raised $85,000.

ALERT: To me, several things really stand out about “Dream.” One is that there’s this, well, this immersion of its committee members in ALS. Usually high school kids, kind and altruistic as they can be, prefer to keep charity at a distance from actual death and dying. That’s not the case here.

CHRIS: A big aspect of our fundraising is to expose our students to people who need the help.

So we have a patient services program. Once a month, our students visit a different person with ALS. We’ve gone all over Long Island with the kids. It’s amazing to see their reactions after a visit: They want to go back. The disease makes what they’re doing real; it inspires them to continue the fight. At the end of the year, you ask the kids what stands out for them and it’s never the glitz or the movie stars. It’s how close they get to the patients. It’s knowing they’re doing something that can help.

ALERT: What’s also unusual is the way “Dream” helps your students career-wise.

CHRIS: Yes. It’s really been a catalyst. Some have gone into PR in college, to be event-planners. Others are interested in working for nonprofits, since we’re officially one. One wants to go into the philanthropy field. We have a grad student in D.C. studying political science. He’s aiming at public service and lobbying for orphan diseases. Then there are the kids who did summer science internships at Packard or other labs; a number are now science majors.

ALERT: And you want to get others started?

CHRIS: We’ve developed an assembly program we take to local schools to increase ALS fundraising. And groups from Nevada and Colorado and Boston have stepped up too.

ALERT: What’s changed over the six years?

CHRIS: Well, it’s not the passion. We’ve managed to maintain that and keep the kids working hard throughout. We’ve been careful to set goals and have seen them reach and exceed them.

But we’re always fine-tuning. This year’s gala was different from all the rest. They’ve all been wonderful, but this year it seemed we’d broken through to a new level. It didn’t seem like it was being done by high school students. It really felt like the beginning of something bigger than all of us.

ALERT: I know you’re on “Dream’s” executive board and that you and the other “alums” give a lot of yourselves…

CHRIS: Yes, but I can honestly say this has shaped my entire life. I keep it near to my heart. And now it’s especially exciting to be in this new phase, to guide others, to do what Mr. Strasser, Pendergast and Deutsch have done for me. I would say I’ve come full circle.