Looking for answers to an incurable disease
BY Steve Edelson • STAFF COLUMNIST • July 3, 2008





There's no shortage of charity golf outings that do incredible things within communities and make a difference in people's lives with the money raised. And some of them can get pretty emotional. It's impossible not to shed a tear during the luncheon at Val Skinner's LIFE event for breast cancer research.

Except you don't really understand how important these things are until one truly hits close to home. And that happened for me on Monday at Caves Valley Golf Club outside Baltimore.

I've known Larry O'Rourke since we were roommates in Bradley Beach a few decades ago, when he was covering the New York Knicks and Seton Hall University for the Passaic Herald News, and later the Trenton Thunder and Princeton University hoops, among other things, for the Trentonian. My wife, Sue, has known him as long as I have.

He's been covering the Philadelphia Eagles for the Allentown Morning Call throughout their current run of success, but he clearly had a problem with his right leg during the 2007 season. We picked him up at his hotel the day of Super Bowl XLII in February, and after riding a shuttle bus I remember how much of a struggle it was for him to make the walk into the University of Phoenix Stadium.

A few weeks later came a diagnosis of Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig's Disease.

So when John Feinstein stood before the crowd on hand to support the Bruce Edwards Foundation for ALS Research, and called the disease a "death sentence," all I could do was steal a glance at my friend and colleague to gauge his reaction, while trying to maintain my composure.

There is no cure. We knew that was the case from the moment he got the news, although we'd never actually talked about it in those terms. And now it was right there, out in the open.

But allow me to backtrack a moment.

This all started a few weeks ago when Hank Gola from the New York Daily News dropped Feinstein, a close friend of Edwards and best-selling author who wrote "Caddie For Life: The Bruce Edwards Story," an e-mail about Larry's situation. Hank wasn't even sure what he was looking for, but what he ultimately got was an invitation from Edwards' sister, Gwyn Dieterle, to have Larry attend the event Feinstein and Tom Watson, who Edwards began caddying for in 1973, have held annually since Edwards lost his 15-month battle in 2004, just hours before the start of the opening round of the Masters.

So the three of us made the trip on Monday afternoon to one of the disease's largest fundraisers, where some of the top ALS researchers would be in attendance. Aside from his doctors, he had gotten so much input from people, we thought this might be the best place to sort it all out.

We didn't go there looking for false hope, and none was offered.

"It's hard to believe it's 67 years after Lou Gehrig died and we're saying, "Well, maybe we can slow it down,' " Feinstein told me.

Liz McFarland, who raises $8 million annually in her job at the Robert Packard Center for ALS Research at Johns Hopkins, spent several hours with us in the clubhouse, listening and providing insight. When asked about the drug Riluzole, which Larry's been taking, she said, "We developed it at Hopkins. It helps a little bit for a little while."

The ultimate goal was to get Larry some time with Dr. Jeffrey Rothstein, the director of the Packard Center, and the world's foremost authority on ALS. Watson, who extensively researched the disease after Edwards' diagnosis, said, "This is the guy who's going to figure it out."

As the golfers began to filter off the course late in the afternoon, Rothstein arrived, and we got our wish.

Last year alone, this event raised some $800,000 for the Packard Center, which is an incredible number for a one-day golf event. Surveying a scene that included everyone from college basketball coaches and PGA Tour players to corporate benefactors, you got a sense of the impact Edwards had on people's lives, and how committed his friends are to making a cure his enduring legacy.

What I came away with is the feeling that if there is to be a cure in our lifetime, it's events like this that will be the driving force behind a breakthrough. Especially for something like ALS, regarded as an "orphan disease" since only 30,000 to 35,000 people are suffering from it at any one time in this country, far fewer than many others.

Who knows. Maybe the $50,000 that was bid on an auction item that included caddying for Watson in the Masters' par-3 contest at Augusta National next spring will be the check that leads to a breakthrough. And maybe it will be in time to help Larry.

And perhaps it was that glimmer of hope made the whole day worthwhile for all of us.

Stephen Edelson is a writer

for the Asbury Park Press.

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