Stony Brook to name ALS clinic after Miller Place man

Christopher Pendergast merely smiled slightly and lowered his head when Dr. Steven Strongwater delivered the news. His wife, Christine, could barely contain her tears.

Surrounded by a roomful of people, Stony Brook University Medical Center's chief executive told Pendergast that, pending approval by the SUNY chancellor, the hospital would name its ALS Comprehensive Care Center after the remarkable Miller Place resident.

Seventeen years ago to the day, Pendergast learned that he had amyotrophic lateral sclerosis, also called Lou Gehrig's disease, a fatal, incurable disease that affects brain and spinal cord nerve cells. Average life expectancy is two to five years.

But Pendergast, 61, a former teacher in Northport, has defied the odds.

In 1998, he founded the annual Ride for Life, raising in total about $3 million for ALS research by riding his motorized wheelchair hundreds of miles - this year from East Hampton to Columbia University, where Lou Gehrig went to college.

He also was a major force behind Stony Brook's opening an ALS clinic in 2002 - the only one on Long Island and one of 34 certified by the ALS Association nationwide - and he has donated about $400,000 to it. The center offers a range of services, from respiratory, physical, occupational and speech therapies to psychological and nutritional services.

It was his advocacy and his inspiration to others that made the hospital want to name the center after Pendergast, something it doesn't normally do, Strongwater said Wednesday.

"A bunch of people are indebted to you for creating the ALS clinic," Strongwater said, leaning toward Pendergast seated in his wheelchair. "We would like to recognize that."

Others, not at the meeting, agreed. The head of the center, Dr. Rahman Pourmand, said as an advocate and longest surviving patient in the center Pendergast was the logical choice. "He's an inspiration, not only for the patients and the families, but even for me as a doctor," he said.

"He's become a local hero for our cause," said Dorine Gordon, president of the ALS Association's Greater New York chapter.

Asked afterward what he was feeling when he heard the news, Pendergast said he was less surprised than relieved that it wasn't about budget cuts to the center. "It's extremely important that the clinic is secure and vibrant," he said.

What would he feel like seeing his name over the entrance? If approved, the ribbon cutting would take place in December. "My name is very long. It took me until the second grade to spell it," he said with a mischievous smile.

Pendergast, who speaks slowly and sometimes needs a ventilator to breathe, said he sees himself not as special but as "doing what anybody in my position would do." He attributed his longevity to not believing in "the statistics."

"I just took it one day at a time and those days have led me on an amazing journey," he said.

His journey as an ALS advocate has resulted in his meeting presidents and Academy Award winners, among others, he said.

"Those are experiences that most people would give their right arm to have," he said. "And so you have to ask yourself: Has my diagnosis been so bad? Has my disease been that terrible? If I am honest, I have to answer 'No. Not really.' "

Living with ALS

What it is: A progressive disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and wasting.

Cause: Unknown

Cure: None

Treatment: Riluzole, the first treatment to alter the course of ALS, has been shown to prolong the life of persons with ALS by at least a few months.

Symptoms: Early symptoms muscle weakness or stiffness. Progresses with weakness, wasting and paralysis of the muscles, including those that control vital functions such as speech, swallowing and later breathing.

Life expectancy: 2-5 years is average. About 10% live more than 10 years; about 5% live 20 years.

Number diagnosed in the U.S. each year: 5,600

Number of known ALS patients in Nassau, Suffolk: 95

SOURCE: ALS Association