An executive on a mission
Shortly before the Red Sox take the field against the Yankees tomorrow night, Jon Roberts and his family will toss out the first pitch. But Roberts's mind may be consumed by a far different battle than the one unfolding before the Green Monster.
Roberts is an executive at
Roberts got involved without much warning. His wife, Resi, fell ill in 2001. First, she had subtle speech problems. Then, a stiff tongue.
A succession of doctors from Atlanta to Boston failed to diagnose her illness. By the time doctors at the Mayo Clinic discovered what was wrong, in November 2002, she had a mere 10 months to live.
Now, CVS has raised $2 million for ALS research in its stores, one $1 donation at a time. That check will be presented to researchers before the game.
''I've heard it described as attending your own funeral," Roberts said of the gradual decline that characterizes death from ALS. ''People who know somebody who had it or are involved with someone who had it become very motivated."
The company first began raising money for ALS research two years ago, after one of its store managers was stricken. But the amount donated by customers has skyrocketed, from $300,000 the first year to this year's $2 million. CVS says that all of the money raised will go directly to research.
''The interesting thing is that only 30,000 people have it, but everyone seems to know someone who has it or to know someone who knows someone," Roberts said on Tuesday.
ALS is a nearly certain killer. Not only does it have no cure, but it has no real treatment. The one drug that is approved for its use extends the life of ALS sufferers by three to six months, a decidedly mixed blessing, given the poor quality of life that marks the last phases of ALS.
The funds will go to the ALS Therapy Alliance, an international group of researchers. As Dr. Robert Brown of Massachusetts General Hospital explains, treatment of ALS has advanced little since Gehrig had the disease in the 1930s, due in part to relatively small investment.
''These funds are stupendous," he said. ''Our gratitude to CVS is profound. They have facilitated an international enterprise the likes of which has never existed."
The research -- which will be conducted here and in England, Canada, and Scotland -- will focus primarily on the genetic basis of the disease. Though only about 10 percent of ALS victims contract the disease because of genetics, isolating and studying the gene associated with it has greatly contributed to understanding it, as with other diseases.
The Red Sox are involved partly through the efforts of pitchers Curt Schilling and Mike Timlin.
Timlin's mother died of ALS in 2002, while Schilling became active in ALS fund-raising when he played in Philadelphia, where an ALS charity enjoys major support. Schilling and his wife, Shonda, have a son named after Lou Gehrig.
''We met a patient back in 1992, a gentleman named Dick Bergeron, who had just been diagnosed," Schilling said last night. ''We were at a time in our life and career where we were looking for something to get involved in, and this seemed like a perfect fit."
Schilling said the goal is simple.
''We want a cure," he said. ''We're not looking for anything but that. I want to be involved when that final dollar is given that leads to a cure."
According to Dr. Brown, a cure is a long way off; an effective treatment would be a major breakthrough.
''It's a little bittersweet," Roberts said of tomorrow night's ceremony. ''I'm sure I'll be thinking about Resi."
He won't be the only one. Not long ago he asked his 10-year old daughter if she thinks about her late mother. She told him, ''Dad, I think about her every second of every day."
Adrian Walker is a Globe columnist. He can be reached at walker@globe.com.
