Striking out for a cause
Local tourney benefits ALS Foundation
By Kyle Jorrey jorrey@theacorn.com

JANN HENDRY/Acorn Newspapers REACH OUT-Stevie Firestone of the Thousand Oaks Bulldawgs extends his arm to home plate just a second ahead of the catcher's tag during Sunday's 10-and-under championship game. Conejo Valley Red won the game in eight hard-fought innings.

What does it take to get a little leaguer to actually crack a smile after striking out, when so many are accustomed to reacting with heart-felt disappointment and aggravation?

Just tell them it's for a good cause.

Such was the idea this past week in Thousand Oaks where 16 teams from four counties got together to compete in the first ever "Strike Out Lou Gehrig's Disease" All-Star Tournament, a week-long event aimed at raising money for those suffering from the fatal neuromuscular disease, amyotrophic lateral sclerosis, or ALS.

JANN HENDRY/Acorn Newspapers DOING THEIR PART-Conejo Valley Little Leaguers Evan Ocello and Arye Kinberg stretch out before the 12-and-under championship game of the 2005 CytRx "Strike Out Lou Gehrig's Disease" All-Star Tournament. In all, the event raised more than $60,000 for the Greater Los Angeles Chapter of the ALS Association. It was held at Fiore Fields in T.O. this past week.

The event, put on by the Conejo Valley Little League and the Greater Los Angeles Chapter of the ALS Association, allowed each team to raise $10 for every strikeout they recorded-an interesting twist on the game that allowed even the team struggling most at the plate to feel good about itself.

"There was a team from El Rio that was just getting beaten up, I mean, losing 20-2, 15-1, and players weren't that upset about it," said Patrick McMinn, an ALS Foundation board member and a Conejo Valley Little League parent. "One kid even smiled and said 'Hey, because we're striking out the most, we're raising the most money.' And he was right."

On Sunday, Conejo Valley Red outlasted the Thousand Oaks Bulldawgs in eight innings to win the 10-and-under tournament championship after falling behind 6-0 after the second inning.

In the 12-and-under title game, an all-star collection of players from Visalia, who traveled more than three hours to attend the event, defeated the Conejo Valley East All-Stars, 8-5.

But the week's biggest winner was clearly the ALS Foundation, which took home $60,000 in donations (including $3,000 raised by the kids alone) toward its mission of helping patients and families suffering from the devastating affects of ALS, a progressive neurodegenerative disease that destroys nerve cells in the brain and spinal cord.

The median lifespan of someone diagnosed with ALS is three to five years.

Fred Fischer is the executive director of the Los Angeles chapter of the ALS Foundation, and a big baseball fan.

"The kids from Conejo Valley know what ALS is because one of the parents on the team has ALS, and they've seen what it's taken from him," Fischer said. "It was a natural fit for the kids to give back and for the parents to get involved.

"It helps gives meaning to the disease. You can say Lou Gehrig's disease or you can say ALS, but until you've sat down and talked with someone who has it, you can't understand just how devastating it is."

Fischer was referring to Gary Hard, a CVLL parent who was diagnosed with ALS five years ago. Hard is the proud parent of up-andcoming All-Stars, Derrick, 11, and Cory, 9.

Hard, who's in the later stages of the disease and can no longer communicate vocally or use his extremities, accompanied his youngest son to the mound to watch him throw out the first pitch of Sunday's 12-and-under championship contest.

The emotion of that moment captured the painful reality of ALS, a disease that affects 30,000 Americans, and produces 5,000 new cases each year.

"It was pretty emotional, but these stories go on and on," said McMinn, a T.O. resident who lost his mother to ALS five years ago. "Once you've known someone who has it, it's kind of hard not to take up the fight."

Despite his condition, Hard was well-known around the league for dragging the CVLL infields between games using his wheelchair-an activity he's had to give up only recently. He rarely misses one of his son's games, or even a practice.

"This tournament all meant a lot to our kids because they've known Gary since they were little and they've seen what it's done to him," said Nancy Frawley, the tournament's director and a board member with the CVLL. "It was a little hard for them to understand at first, but now it's something that really sticks with them. They are so happy to be using baseball to help people-all these teams are. It's really something special."

Thousand Oaks Little League featured one team apiece in the two age divisions, while CVLL had a total of five.

Watching with great pleasure the championship games on Sunday, Dr. Scott Weiland, vice president of clinical trials at CytRx, the local biopharmaceutical company that sponsored the tournament, said the fight to cure ALS grows stronger as awareness about the disease grows.

"I've done a lot of Alzheimer's research in my life and there's plenty of awareness for it, with Ronald Reagan and everything else. But with ALS, it's different," said Weiland. "It's a smaller group of people, so people don't realize what a devastating disease it is. That's why events such as these are so important."

Weiland said CytRx is about to begin a clinical study on a new ALS drug that the company, and ALS sufferers, have high hopes for.

"Hopefully it will be a breakthrough and be a drug that not only improves the quality of life of ALS patients, but slows the progression of the disease. Not much has happened in the last five years, so this could be huge," Weiland said. "Is it a cure? No. But we're still working. It's another step.We're still searching for that Holy Grail."

Though players in the tournament might not be able to truly comprehend a disease that leaves its victims with no hope for recovery, robbing them of their motor skills while leaving their minds intact, tournament organizers said there's no doubt they understood their impact.

"The kids and teams really adopted the spirit of what this whole Lou Gehrig tournament was about," McMinn said. "There's no question they understand they are helping people, and it makes them feel good."

One guest who was particularly touched was T.O. resident and ALS patient Denise Glass, a dedicated spokesperson in the fight against the disease she was diagnosed with three years ago.

"To see young kids playing in such a great environment and having fun doing what they love-it's just amazing," said an emotional Glass. "But to think about how we've raised their awareness, touched their hearts and minds, and hopefully passed on knowledge about ALS to the next generation, it makes it so special."