[BobbyB]

Fighting spirit vs. implacable foe
ALS victim stunned by outpouring of kindness
July 27, 2008



Suzanne and Rich Holwitt are coping with the effects of a life-alterning medical condition. Last year, Rich, 60, was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease.



Rich Holwitt wouldn't call himself an angry man.

Not that he'd apply the word "accepting" to himself, either.
Being diagnosed last year with amyotrophic lateral sclerosis -- Lou Gehrig's disease -- continues to entail seismic adjustments.

ALS doesn't stop until it kills its victim after disabling nerves and muscles in its relentless march through the body.

The family has to move down the street from their Town of Chenango home to a more accommodating, universally accessible house that will be built soon.

Rich can't work in commercial real estate anymore. He can't play tennis, and he can't offer much this year to the Levene, Gouldin & Thompson Tennis Challenger event he helped bring to Binghamton 15 years ago and, with his family, has avidly supported ever since.

Walking comes only with assistance.

But is Rich, 60, angry at life? No, he says.

He does fully admit to a certain amount of well-directed fury, however.

First, he points to a government that refuses significant funding for research of rare diseases such as ALS, forcing the most promising scientists to relocate to more supportive countries.

In a Guest Viewpoint published earlier this month, he blasted Sen. Tom Coburn, R-Oklahoma, a physician who single-handedly blocked Senate Bill 1382. That bill would establish a national registry for ALS, which would track information about victims of this little-known and little-understood condition.

"This hold tactic is a callous, selfish act that will affect me and thousands of ALS patients who will eventually become paralyzed and die of suffocation from this horrible disease," Rich wrote.

Then there are the big pharmaceutical companies. Check out the pull-down menus on their Web sites, he says, to see what diseases command their attention and research and development dollars. ALS isn't on any list, he points out, and it's 100 percent fatal.

He's part of a clinical trial through Columbia Presbyterian Hospital's Eleanor and Lou Gehrig MDA/ALS Center, but he doesn't know if he's getting medication or a placebo. At present, he has upper and lower body motor issues, but his speech is unaffected.

And that's important.

"I'm going to fight this," he says. "I'm going to make some noise about it."

He had to retire because ALS rendered him the most ineffective real estate broker on Planet Earth, he says. But there's still a lot he can do, and raising Cain about ALS is one of those things.

But when he talks about some aspects of life in the present tense, his tone changes and wife Suzanne pushes the box of tissues to him across the table.

He and his family are members of Temple Concord, but he's not sure about the Supreme Being thing.

He sees spirituality in his fellow man, though -- now more than ever. "It's the embrace of people that has been humbling and in some ways stunning," he says.

People have bombarded them with kindness ever since word leaked out about those three loathsome, life-changing letters having invaded the Holwitts' lives.

"It constantly amazes us," says Suzanne, who's retired from teaching in the Binghamton schools. "People e-mail, call, stop me in the supermarket -- we've heard from people we haven't heard from in 25 years."

Neighbors weed the gardens Rich loved to putter in, plow snow out of the driveway in winter, offer support in whatever form the Holwitts can use.

Rich and Ron Sall go way back. Ron's downtown store, Sall-Stearns, fit both Holwitt sons, 23- year-old Ben and 25-year-old David, for their bar mitzvahs. For the decades of their friendship, Rich and Ron have shared a fondness for quality scotch.

"I've got a 30-year supply, and I'm planning to share it all with him," Ron says.

Some of those friends are throwing a benefit for the family and the local MDA/ALS group. It will take place at 6:30 p.m. Aug. 5 at Recreation Park tennis courts after the Levene, Gouldin and Thompson USTA Challen-ger matches wrap up for the day.

There are three purposes to the benefit, says friend Linda Lisman of Binghamton: to raise money for the Holwitts, specifically, for a mobility van; to raise awareness of this obscure syndrome -- and to help raise money for ALS research.

"Because this is what Rich wants."



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If you go
A benefit called Tennis Celebration: A tribute to Rich Holwitt will take place during the Levene, Gouldin & Thompson Tennis Challenger, an event Rich helped bring to Greater Binghamton 15 years ago. It will begin in the VIP Tent at Recreation Park in Binghamton at 6:30 p.m. Aug. 5 and feature hors d'ouvres, wine, beer, beverages, desserts, music by United Sound, a silent auction and a 50/50 raffle. Admission is $20, and organizers would appreciate it if you'd reserve a place by e-mailing lbkash@stny.rr.com.


Proceeds will support Rich, who has been diagnosed with amyotrophic lateral sclerosis (ALS),with a portion going to the local chapter of MDA/ALS.


Donations can be mailed to MDA/ALS -- Rich Holwitt Fund, c/o 2714 Manhattan Drive, Endwell N.Y. 13760