Christopher Pendergast, who grew into a powerhouse advocate working for a cure against the debilitating Lou Gehrig’s disease he battled for nearly three decades, died Wednesday at his Miller Place home, family and friends said. He was 71.
Pendergast, a former Northport elementary teacher, founded the nonprofit charity Ride for Life Inc. in 1997, four years after he was diagnosed with Amyotrophic Lateral Sclerosis, commonly known as ALS.
The disease has no cure and progressively paralyzes patients and leads to death. But Pendergast defied the odds and tirelessly worked to raise and donate millions toward finding a cure and helping other ALS patients.
"He was a marvelous man who was an inspiration to so many people," said Theresa Imperato, nurse coordinator with Stony Brook’s ALS clinic named after Pendergast. "He devoted his life to help others with ALS and provide them with a better life."
Pendergast was the major force behind that ALS clinic’s opening in 2002, one of dozens in the country certified by the ALS Association. The clinic offers services that include respiratory, physical, occupational and speech therapies linked to the disease.
Imperato, who has known Pendergast from the time of his diagnosis, said 80% of ALS patients die within a decade. But Pendergast drew strength from his advocacy, which gave him a will to live, she said.
"He willed himself to live longer," Imperato said.
Pendergast’s family released a statement Wednesday about their beloved father: "He fought ALS bravely for 28 years and dedicated 23 of those years [to] raising awareness and funds for ALS. He touched so many lives but at the end of the day, he was just 'our dad' who happened to do remarkable things."
Pendergast’s daughter, Melissa Scriven, 43 of Stony Brook, said Wednesday night she felt fortunate she spent the first 15 years of her life sharing life experiences with her caring father prior to his diagnosis.
"He was everything to our family, that is putting his ALS work aside," Scriven said while her voice cracked from emotion. "He didn’t want our lives to become ALS, his plight, to become ours. Because we loved him so tremendously, we all just jumped on board," she said.
She marveled at her dad’s nonstop work post-diagnosis, determining early that he was outliving most ALS patients.
"He would always, say, ‘I have to earn what I’m getting right now.’ He wanted to do something to give a face to ALS. He wanted to make sure ALS wasn’t just something you were diagnosed with, and three years later you’re in the ground and nothing was ever done about it."
Scriven said her family would not change anything about her father’s journey, or theirs helping him along the way. She noted it brought them closer.
She also said while the disease physically affected her father, it did not touch his mind, as was evidence by living on his own terms.
"His mind was completely intact. He became somewhat of a prisoner in his own body, with a 100 percent functioning mind," Scriven said. "He did it the way he wanted to do it, like Frank Sinatra would say, he did it his way."
The annual Ride for Life that Pendergast founded helped raise $10 million over the years, organizers said. During the event, Pendergast rode his motorized wheelchair hundreds of miles. The longest of the charity rides was a more than two-week trek 350 miles from Gehrig’s grave in Valhalla, New York, to the nation’s capital.
Ray Manzoni, chairman of the Ride for Life nonprofit, said in a statement that Pendergast was a "special caring loving man of faith."
Kristen Cocoman, president and CEO of the ALS Association Greater New York Chapter, based in Manhattan, said she has known Pendergast and his family for nearly two decades.
"He would advocate locally on behalf of the ALS community. That is something you can’t quantify, it’s priceless," Cocoman said.
Cocoman said Pendergast is an inspiration to herself and others fighting for a cure.
"I’m going to continue to fight. We owe it to Chris and all others who have gone before him."
Pendergast’s memoir, "Blink Spoken here," describes his decadeslong battle with the disease. He told Newsday in July about the book, which he wrote over several years with high-tech software he used to share his thoughts by staring at two infrared cameras that tracked his eyes, determined where he was looking on the screen, and enabled him to type his thoughts.
Visitation will be held Sunday at the O.B. Davis Funeral Home in Miller Place from 1 p.m. to 4 p.m. and 6 p.m. to 9 p.m. with a 60-person limit. There will be a prayer service at 8:30 p.m. that will be livestreamed at the funeral home's website, ObdavismillerPlace.com.
The funeral Mass will be held Monday at 10 a.m. at the St. Louis de Montfort R.C. Church in Sound Beach.
In addition to Scriven, Pendergast is survived by his wife, Christine Pendergast, of Miller Place, and his son Buddy Pendergast, also of Miller Place, and his grandson, Patrick Scali.