CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

By Anthony Castrovince | MLB.com Columnist

The day's first seizure usually comes at 9:10 a.m.
Sarah Fradkin has it down to the minute, and she's powerless to stop it.

"I can't control it," Fradkin says. "I just go through the day, every day, and I just go with it."

As do about three million other Americans, 11-year-old Sarah has epilepsy. She was diagnosed with the disease after suffering her first seizure the day before she started first grade.

Though medication has helped others with epilepsy live a normal life, doctors have been unable to control Sarah's seizures. She's tried medicine, diets and even multiple brain surgeries in an effort to find a solution, but the daily episodes -- some of which can last up to three hours -- continue, costing her all-too-many precious moments of her otherwise active and ebullient youth.

Sarah, though, has a team of people in her corner beyond the doctors; beyond her loving parents, David and Monica; beyond her younger brothers, Noah and Max. It's a team of baseball people -- Hall of Famers, general managers, coaches and active All-Stars -- who have lent their time and talents to help a little girl many of them haven't even met and to help a cause that too often goes unnoticed.

Beginning June 1 and continuing until June 18, fans will be able to bid on experiences offered by these people in an effort to raise money to strike out seizures -- for Sarah and for so many others.

It's all centered on the S4 Epilepsy Walk, an event that will take place on June 9 in Southbury, Conn., Sarah's hometown. And her father has arranged it with the help of his many Major League connections.

"This is the most I've ever asked of these guys," says David Fradkin, who runs a baseball apparel company named Ropes. "For my business it was, 'Let's go drink beer.' For this it was a little more involved. This is for my daughter, and these guys know that they're helping other people, too."

The auction will help the S4 (Sarah & Southbury Strikeout Seizures) event and CURE (Citizens United for Research in Epilepsy) by giving the top bidders some rare glimpses into the players' world.

Fans will be able to bid on such items as lunch with Jim Thome, 18 holes of golf with Paul Molitor and Bert Blyleven, and a meeting at Fenway Park with Adrian Gonzalez. One winning bidder will help Giants manager Bruce Bochy fill out his lineup card, another will get a private pitching lesson from Felix Hernandez and another will get a knuckleball lesson from Tom Candiotti.

Chris Carpenter, Tim Wakefield, Cito Gaston, Pat Hentgen, Brian Giles, Bud Black, Eric Wedge, Sandy Alomar Jr., Charles Nagy and Robin Ventura are just some of the baseball personnel, past and present, who, one way or another are up for bid, be it for a meet-and-greet at the field or a day at the links.

A sampling of items up for auction can be viewed at the SF Epilepsy Walk site (www.s4epilepsywalk.com). The auction will take place at charitybuzz.com.

True to the sport's nature, some of those involved are taking a competitive edge to the proceedings. Phillies general manager Ruben Amaro Jr. and Yankees GM Brian Cashman, for instance, have both offered a private tour of their respective ballparks, game tickets, personal scoreboard messages and autographs.

"Ruben and Brian are good friends," Fradkin says, "so now they're having a little competition to see whose experience is going to raise more money."

"Fraddy," as David is affectionately known to many of these men, is hoping to raise upwards of $40,000 for epilepsy research through the event. Judging by the depth and breadth of the experiences up for bid, that number could prove to be conservative.

But whatever the final tally, the overriding theme is a wide swath of baseball people bonding together over a worthy cause. Fradkin was a college teammate and roommate of Nagy -- the former Cleveland Indians pitcher who is now the D-backs' pitching coach -- and from that initial connection, many more friendships evolved over the years.

Now his friends are pitching in.

"These guys are stepping up in a big way," Fradkin says. "I'm sure some fans are skeptical of professional athletes and say, 'Why don't they do more?' You know what? Here's a perfect case of guys doing more."

Fradkin turned to his friends when he learned how underfunded epilepsy research is compared with some other diseases. According to the CURE web site, almost 500 new cases of epilepsy are diagnosed in the U.S. every day, and the disease affects 50 million people worldwide. A study by the Institute of Medicine concluded that one in 26 people will develop epilepsy in their lifetime.

But in a 2008 study, CURE found that the total research funding per epilepsy patient in the U.S. was between $500 and $590, compared with the $620 to $760 for autism, $900 to $1,200 for Alzheimer's and $2,000 to $2,500 for Parkinson's.

Susan Axelrod, the chairwoman of CURE's board of directors, said that the lack of a spokesperson for epilepsy has affected public consciousness about the disease.

"So it is critically important that patients and family members come forward themselves and share their stories, their hopes and their dreams," Axelrod said. "What the Fradkins are doing on behalf of millions of Americans with epilepsy is critical to raising the funds we so desperately need to advance research efforts toward a cure. To hear so many great MLB players talking about epilepsy and pledging their support is phenomenal."

One baseball man has a particular investment in the cause. Buddy Bell, the former third baseman and manager and current White Sox director of player development, was diagnosed with epilepsy when he was 22, and played the bulk of his 18-year career with the disease.

"There were a couple of times where I wasn't able to play because of a seizure," Bell says. "I remember one night in New York, I was taking a shower in the morning, and next thing I know, I woke up in the tub. Obviously, I wasn't able to play that day."

Thanks to medication, Bell hasn't had a seizure in 20 years. But he knows there are others, such as Sarah, who aren't nearly as fortunate, which is why he's one of the many involved with S4.

"There's such a misconception or lack of intelligence as far as what epilepsy really is," he says. "It's such a devastating disease for a lot of people. David's done a good job getting that out and getting a lot of people involved in this thing."

And Fradkin's inspiration is an 11-year-old girl who, despite her frequent bouts with seizures, remains wholly optimistic that a solution will be found.

"I know that all these people are supporting me," Sarah says. "I think that it's really great that they're giving donations and creating awareness and helping out."

 

To learn more about S4, click here

 


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