ALS Ride for Life Founder Dies 27 Years After Being Diagnosed with Disease: 'He Did It His Way'

"He wanted to do something to give a face to ALS," Melissa Scriven said of her father, Christopher Pendergast

Christopher Pendergast
Christopher Pendergast. Photo: Christopher Pendergast/ facebook

A Long Island man has died after spending close to 30 years championing a cure for amyotrophic lateral sclerosis (ALS) while also battling the debilitating disease himself, according to Newsday.

Christopher Pendergast died at his home on Wednesday, 28 years after he was diagnosed with ALS, which is also commonly referred to as Lou Gehrig's Disease, his family confirmed to the outlet. He was 71.

Pendergast was known for founding ALS Ride for Life, an organization that aims to bring more awareness to the disease, support patients and families through their journey and raises funds for research, its website states.

ALS Ride for Life also holds an event every May during ALS Awareness Month. Per tradition, patients ride their power wheelchairs across the highways of Long Island to Manhattan in order to push their mission forward.

"He fought ALS bravely for 28 years and dedicated 23 of those years [to] raising awareness and funds for ALS," his family told Newsday. "He touched so many lives but at the end of the day, he was just 'our dad' who happened to do remarkable things."

Christopher Pendergast
Christopher Pendergast. ALS RIDE FOR LIFE/ Facebook

"Although a quadriplegic on a ventilator and using an eye-gaze computer to communicate, in his final days, Chris still continued to remain active with the Ride," his organization added in a post on Facebook. "Through his tireless leadership and activism, more than $10 million has been raised for research, patient services, and education about this dreadful disease."

Though Pendergast spent 28 years battling the disease, his daughter Melissa Scriven explained to Newsday that he only seemed to be physically affected.

This is common for ALS patients, as the disease attacks nerve cells in the brain and the spinal cord, causing a progression of muscle weakness and paralysis, according to the ALS Association's website.

Some patients also lose control of their ability to speak, swallow and breathe, which is why the average survival time is believed to be three years with only 5 percent of patients living beyond 20 years, the website states.

"His mind was completely intact," Scriven, 43, shared with Newsday. "He became somewhat of a prisoner in his own body, with a 100 percent functioning mind."

Scriven said her father never gave up and vowed to beat the odds.

"He wanted to do something to give a face to ALS," she recalled to the local outlet. "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."

"He did it the way he wanted to do it. Like Frank Sinatra would say, he did it his way," she continued.

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She also acknowledged how her father was passionate about finding a cure.

"He was everything to our family, that is putting his ALS work aside," Scriven explained to Newsday. "He didn’t want our lives to become ALS, his plight... Because we loved him so tremendously, we all just jumped on board."

In addition to raising over $10 million in research, patient services and education, Pendergast also helped open an ALS clinic in Stony Brook in 2002, which eventually was named after him, Newsday reported.

The clinic offers patients a variety of services, including respiratory therapy, physical therapy, occupational therapy and speech therapy, according to the outlet.

Theresa Imperato, a nurse coordinator at the clinic, told Newsday that Pendergast was an inspiration to all those who knew him, especially after surviving far beyond the typical life expectancy.

"He willed himself to live longer," Imperato said. "He was a marvelous man who was an inspiration to so many people."

"He devoted his life to help others with ALS and provide them with a better life," she added.

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