Fran Delaney

Fran Delaney
By Brian McGrory, 9/4/2022

It was one of those spring Sundays made for lambs to trot across dewy meadows, a day when chatty police officers issue warnings rather than tickets, a day, more to the point, when Fran Delaney found himself with an 8-foot putt on the 18th hole of his home course to break the hallowed barrier of 80.

He missed it, but that's what life is - hits and misses, the former hopefully more prevalent than the latter. He could only laugh and vow to his playing partner, his wife, that he'd shoot a 79 in the coming weeks and months. No reason not to.

How quickly life can turn.

The next day, Delaney found himself sitting in a tiny examination room with a doctor in a laboratory coat as white as snow explaining in the most leaden voice that the pinched nerve in his shoulder was actually a sign of Lou Gehrig's disease.

Fran Delaney, the doctor was saying in tone if not in words, was going to die.

''I actually thought to myself that it had to be a mistake,'' Delaney was saying recently. ''I mean, I just shot an 80 at Sky Meadow.''

It wouldn't be a simple death. Lou Gehrig's Disease, also known as amyotrophic lateral sclerosis, a brain and spinal-nerve affliction, is arguably the most insidious way to go. It attacks one part of the body after another in seemingly haphazard fashion, eating away at muscles and causing paralysis until the very ability to breathe is slowly, gradually destroyed.

All the while, the mind continues to function at its normal level, leaving the patient, in the words of ALS researcher James Heywood, ''a prisoner in his own body.''

There is no known cure, no effective therapy. Victims usually die three to five years after they are diagnosed. Drug companies don't pour money into research for potential medicines because the disease afflicts just 35,000 people in the United States.

''If ALS was a book, it's author would be Stephen King,'' says Delaney.

His diagnosis was two years ago. Now 50, a vice president with Compaq, he lost almost all use of his left arm, then his left leg, and recently the ALS has been eating into his right arm. What's next, he can only assume; how long it will take is what he fears.

But here's the remarkable part. Rather than fold into a world of self-pity, Fran Delaney and a small army of his friends are fighting back against a seemingly unbeatable enemy.

What he's doing is raising money - lots of it - to be handed over to Heywood's nonprofit group, the ALS Therapy Development Foundation in Newton. Heywood, an MIT-trained mechanical engineer, opened the center with a team of medical researchers in 1998 after his brother was diagnosed with ALS. They practice what's known as guerilla research, frantically searching for a cure not for the ages, but right now.

Delaney summoned a group of 20 family members and friends to his Lexington house earlier this year to devise a strategy. Since then, the results have been stunning.

Two golf tournaments in July, one of them organized by Delaney's fellow alumni of the former Digital Equipment Corp., raised more than $160,000. A mass mailing brought in $80,000 more. George Grey, the owner of Lexington Toyota, kicked in $13,000. In all, Delaney has raised $350,000 for the cause, and has set a goal of $1 million.

Along the way, he's been astounded by the people who have helped him out. ''It started out about me, but as I've met so many more people with the disease it's about the 35,000 people living with it, and the 5,000 people a year diagnosed with it,'' he says.

The activity gives him hope. The money may lead to something more.

To contribute, send a check to the Fran Delaney Fund, c/o ALS Therapy Development Foundation, 44 Glen Ave., Newton, MA 02459.

Brian McGrory can be reached by e-mail at mailto:mcgrory@globe.com


This story ran on page B1 of the Boston Globe on 9/4/2001.
Copyright 2001 Globe Newspaper Company.

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