Family and friends celebrate ALS nonprofit founder’s special birthday

While reaching 70 years old is a celebratory milestone for many, for one Miller Place resident, the birthday was a triumph.

On April 28, Chris Pendergast celebrated a special day which loved ones and doctors thought he wouldn’t see after being diagnosed with amyotrophic lateral sclerosis, also known as ALS and Lou Gehrig’s disease, 26 years ago. Most patients only live a few years after being diagnosed. Pendergast is the founder of ALS Ride For Life, the Stony Brook-based nonprofit dedicated to raising awareness about ALS, funding research and providing patient services.

More than two weeks before his big day, family members and friends attended a party for Pendergast at 89 North Music Venue in Patchogue to celebrate, while the Billy Joel tribute band Big Shot belted out some classic tunes. His wife, Christine Pendergast, said at the party he was surprised with a computer program that allows his communication device to generate his voice instead of a robotic one. The device produces a voice after he gazes at a letter, and the new program was put together using past recordings of him being interviewed.

Christine Pendergast said her husband was surprised and overwhelmed by the gift, and she and their children were emotional, too.

“You know you lose so much with ALS that having the gift of your own voice given back to you is a true gift of who you are as a person, and what you used to be before you lost so much to ALS,” she said.

Fellow ALS patient Paul Weisman, who described Pendergast as a living, breathing miracle, said the gift presentation was emotional for everyone in the room.

“When they gave him his present, where he got his voice back, I was standing right next to Chris and I could see and hear people sobbing — not just crying but sobbing — because they were so happy that he got his voice back,” Weisman said.

ALS Ride For Life started when Chris Pendergast embarked on a ride with his electric scooter from Yankee Stadium in the Bronx to Washington, D.C., 22 years ago to raise awareness about the disease and raise funds for research. After a few years, the ride was contained to New York — from Riverhead to the Bronx — where participants stop by schools along the way that take part in the organization’s presentations throughout the school year. This year’s ride events run from May 6 through 18.

“It’s very hard to believe that this will be his 22nd ride, and from that one small spark of an idea to raising $8 million is just a testament to what one person can actually create and inspire so many others to join his mission.”

— Christine Pendergast

Christine Pendergast said she thought the first ride was going to be a one-time event. The nonprofit started out with a few people at a kitchen table trying to figure out how Chris Pendergast would do the ride, she said, and once they realized they could raise money, the group decided to start a nonprofit.

“It’s very hard to believe that this will be his 22nd ride, and from that one small spark of an idea to raising $8 million is just a testament to what one person can actually create and inspire so many others to join his mission,” Pendergast’s wife said.

Richard Iannuzzi, 2nd vice chair of ALS Ride For Life, described the nonprofit’s founder as persistent and strong willed.

“I think that’s probably key to what makes him do such terrific things with the ride as well as maintaining his own disposition in his approach to the disease,” Iannuzzi said.

The 2nd vice chair said he met the Pendergasts 20 years ago through the teachers union as Chris Pendergast was a teacher in Northport while his wife taught in Comsewogue for 32 years.

Iannuzzi said he estimates the group can visit up to 90 schools from September through May with presentations to raise awareness about ALS. The board member said Pendergast, through the example of his life, sends a general message to students about not losing hope, never giving up and always being optimistic.

“He always wants to deliver the message that if he doesn’t find his situation hopeless then you as a youngster — who is probably going through your own challenges, whether it’s bullying or divorce at home or what have you — if he doesn’t feel hopeless, and he can seek help the way we’re asking them for help, then you in the audience, if you’re facing the challenges of life, be sure to reach out and seek help from your parents and your teachers,” he said.

During the Ride For Life events Long Island students and teachers line up with signs and cheer the ALS patients during the two-week trip, Iannuzzi said.

“For the patients, it’s very exciting to have the attention, and for the youngsters, it’s very exciting to see they’re doing something good, and they’re supporting a wonderful cause,” he said.

Weisman, who is 58 and was diagnosed with ALS a little more than six years ago, said he found ALS Ride For Life online while researching the disease and met with the Pendergasts soon after discovering the organization.

“When you’re diagnosed with ALS, your world is just completely turned upside down where I couldn’t work anymore,” he said. “So being with the ride has given me a purpose in life.”

Weisman, who helps to conduct the school presentations, said he could do them all day, every day if possible, and he thinks the message resonates with everybody.

“It’s not just about ALS,” he said. “This is in life in general. We’re all going to go through some pretty tough times, but you can ask for help. It’s OK.”

To celebrate the 20th anniversary of the walk in 2017, Chris Pendergast road his wheelchair once again from Yankee Stadium to D.C., and Weisman said he walked along with him to talk to Congress members to advocate for ALS awareness. He also participates in the annual rides on Long Island.

“The energy we get from these kids — you read in the papers and a lot of people talk about kids these days this that and the other thing — but I go from school to school to school,” he said. “I spend time with these kids, and I have to tell you, man, we’re in good shape with these kids out there. They’re so encouraging. They just want to help. You can see the empathy they have.”

Christine Pendergast said the funds raised by Ride For Life go toward ALS research, patient services, nursing respite plans, scholarships, a mobility program with a fleet of eight handicapped vans and to fund the Stony Brook University clinic that has been named the Christopher Pendergast ALS Center of Excellence.

On May 11, ALS Ride For Life will hold its pinwheel ceremony at SBU where 6,000 pinwheels will be planted to represent those who have died from ALS in the past year. Those who have lost family members or friends to the disease can ask that their loved ones be added to a list of 90 whose names will be read that day to represent the patients who are lost to ALS every 90 minutes.