These Phillies fans have a personal stake in ALS battle
By BOB COONEY
Philadelphia Daily News

cooneyb@phillynews.com

BARRY SCHULTZ refereed close to 70 basketball games last season, among them a smattering of South Jersey high school games, with the bigger load being local Division I and II college games.
He's been doing it for 32 years. And doesn't want to get out of it any time soon. He wishes he can make the decision when he blows the whistle one last time, but knows that won't be the case. The disease that he was diagnosed with 2 1/2 years ago, ALS, will make that decision for him.

Schultz, from Haddon Heights, N.J., was the epitome of health and happiness yesterday in the media room of Citizens Bank Park as he and his wife, Sue, met and chatted with Phillie players during the 19th annual Phillies Phestival. The Phestival raises money for ALS, also known as Lou Gehrig's Disease. The Schultzes chatted with Jimmy Rollins, Ryan Howard, Jamie Moyer and Cole Hamels, among others.

"I had started feeling something strange in my right arm," said Schultz, 53. "When I went to the doctor, he knew what it was pretty much right away. There's no blood test or X-ray to confirm you have the disease. But I've been very fortunate so far. I'm still able to do the things I was doing before I was diagnosed. My doctors at Johns Hopkins have told me that as long as I'm able, to lead my life as normal as possible."

That not only includes his work on the basketball court, but putting his time in at the gym, putting countless miles on the treadmill and hitting the weights as much as possible.

"I'm starting to feel a little more tired some days than others, and when that happens, I go to bed and get up the next day and start over," Schultz said. "As long as I'm able to do what I love to do, I will. And, hopefully, that means being a referee for a lot more years."

When Wes Rose, of Glenside, was diagnosed 3 years ago, his first reaction was anger. Not sadness, not pity. Anger.

"I remember thinking how this wasn't fair and wondering how the boys were going to grow up without a father," said Rose, 36. "Then it was something my wife, Kelly, said that made me turn the corner. She said, 'If you're strong about this, they'll learn how to be strong through you.' That made me realize that I could do something about this. That I could get involved in ALS. That I could go to Harrisburg to help raise money. That I could get in touch with the Phillies and help raise money."

As he spoke, Rose, a professor in Arcardia University's biology department, couldn't take his eyes off his sons, Nathan, 6, and Aidan, 4. It was harder to tell which of the three was more excited about meeting the Phillies players.

The Phestival raised a record $758,540 this year and has generated more than $10.1 million. Last night's crowd was again plentiful. The autograph booth featuring Chase Utley had the largest crowd throughout the night, a fair mix among giddy young girls, wide-eyed kids and more than a few jealous boyfriends.

Not lost in the evening, though, was the reason everyone was there in the first place: to fight the dreaded disease.

"Anyone at any age can get diagnosed," said Sue Schultz, as her husband chatted with catcher Chris Coste. "Barry and I have become so involved in ALS since his diagnosis. We were part of a bike ride this year and our group alone raised close to $23,000. We're lucky that his disease hasn't advanced very far yet. And Barry is so positive about what his future holds. He gives me strength."

Although his body is starting to show signs of the disease, Rose is strength personified. His blue eyes blaze as he talks about his willingness to do anything possible to raise awareness and money for ALS.

"Sometimes I get frustrated, like when we went down to the beach and I couldn't go in the water with the boys," Rose said. "But you know what? I can do a lot of things still. I don't think about 5 or 10 years down the road. I think about today and don't ever take a day for granted."

Schultz has a little bit of a different outlook.

"The work that we do now, to me, is for the people who will be diagnosed with this in the future," he said. "I don't know if they'll find a cure during my lifetime, though I certainly hope they do. But all this work and money we get now will be a huge help in finding a cure quickly." *

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