Tags Posts tagged with "Amyotrophic Lateral Sclerosis"

Amyotrophic Lateral Sclerosis

Chris Pendergast celebrates his 70th birthday at 89 North Music Venue in Patchogue with family and friends. Photo by Elliot Perry

At St. Louis de Montfort R.C. Church in Sound Beach, Monday, Oct. 19, those who came to mourn the passing of Chris Pendergast filled the pews, or at least as much as they could while trying to distance due to COVID-19.

Founder of ALS Ride for Life and renowned North Shore figure, Pendergast passed Oct. 14 surrounded by friends and family. He was 71. The nonprofit he founded reported Monday, Oct. 12, that Pendergast was starting to receive home hospice care. The organization announced his death Wednesday afternoon.

Authors Dr. Christopher Pendergast and Christine Pendergast

ALS Ride for Life started when 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 state — 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. 

Pendergast, a Miller Place resident and former Northport elementary teacher had lived with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, for 28 years. When doctors diagnosed him, they thought he only had a few years to live. 

Many who gathered together to pay respects to the Ride for Life founder have been touched in some way by amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, a debilitating condition that, over time, paralyzes a person and eventually leads to their death. Father Francis Pizzarelli, director of nonprofit Hope House Ministries, led the funeral Mass at the church, and said to those gathered that his own brother had been diagnosed with the disease at 36 years of age several years ago. Without even knowing it at the time, the Pendergast family reached out to his brother to offer him advice and comfort, something that made “a profound difference in his life.”

Not only did he defy those odds, but he would spend more than two decades after his diagnosis raising millions for ALS research and spreading awareness for it.

Chris’ wife of close to 50 years, Christine Pendergast, said beyond all the work he’s done over the past two decades in advocacy and fundraising, he will be remembered by her and her family as a loving father.

“While everybody is remembering Chris as an ALS advocate and fighter, at the end of the day he was my husband, our children’s father and our grandson’s poppy,” she said.

Monday’s funeral Mass was one of somber remembrances, and tissue boxes were always close at hand. But at the same time, both Pizzarelli and the Pendergast family looked for ways to say though he may be gone, his life should serve as an example. 

Pendergast’s daughter, Melissa Scriven, said during the funeral Mass her father was a supremely intelligent man, one who was exacting when it came to her homework as a child. Before he was diagnosed with the paralyzing disease, Pendergast was a handyman, able to “fix anything, even if it was with duct tape.” Her dad’s favorite meal to make when his wife was working late was “tuna noodle casserole, warm, with crushed Doritos … so my brother and I didn’t really like it when my mom worked late.” 

During a funeral that was filled with music, some of which were songs Pendergast loved in life, Scriven played one she said was her dad’s favorite, John Denver’s “Take Me Home, Country Roads,” in which everyone’s tears dried ever so briefly as they joined in the chorus: “Country roads, take me home to the place I belong.”

Pendergast Leaves Lasting Mark

The founder of ALS Ride for Life became an icon and symbol for the North Shore for never giving up. Even as he lost the ability to speak and had to communicate with an eye-to-speech device, his determination never seemed to relent. Just this year, Pendergast, alongside his wife Christine, released the book “Blink Spoken Here: Tales from a Journey to Within” about his life since his diagnosis in 1993.

Ray Manzoni, chairman of the board for ALS Ride for Life based in Stony Brook University, knew Chris for many years, as both their kids went to school together in Miller Place. It was one day after both he and Pendergast were together after Mass that the educator told Manzoni he was likely to die in a few years, and that he wanted to raise awareness. 

Pallbearers lift Pendergasts casket into the car that will take him to his final resting place at Washington Memorial Park in Mount Sinai. Photo by Kyle Barr

Since then, the organization has raised over $10 million for advocacy and research. Their yearly Ride for Life trips were later accompanied by visits to close to 90 school districts on Long Island.

“Anyone who knew him, I believe he helped us all to live a better life,” Manzoni said. “He was a teacher of gifted and talented kids, and he took this terrible disease and turned it into amazing positive life.”

Paul Weisman, a member of ALS Ride for Life, was diagnosed with the disease in January 2013. Getting introduced to Ride for Life, he started going out with the nonprofit’s founder during their school trips. He would also visit some districts without Pendergast. The organization and its founder gave him a real purpose, “something to strive for, something bigger than myself, to raise as much awareness to fight this disease.”

“Meeting Chris, he gave me hope that three to five years might not be true, that there may still be life here,” Weisman said. 

Pendergast had four mantras: Never give up, never lose hope, always remain optimistic and be willing to defy the odds. Weisman loved that last one so much he had it tattooed on his left arm. Upon showing his new ink to the Ride for Life founder, Weisman said his mentor and friend smiled.

“Chris could smile and light up a room,” he said. “We all want to do something with our lives, but he certainly did.”

Pendergast’s roots on the North Shore ran deep, so much so that he became renowned in local school districts. He traveled from classroom to classroom, auditorium to auditorium, helping young people from elementary on up understand ALS but, more importantly, serve as a role model for what bravery truly looked like. Manzoni said students would often embrace Pendergast after these talks. As the years fell by, young students who were inspired by the Ride for Life founder would internalize his message. The board chairman said one time an EMT stopped by the side of the road during the annual ride and told Pendergast how his example inspired them to want to help others.

“If you had the honor of meeting him, riding or walking next to Chris in his ALS Ride for Life from Montauk to Manhattan, or hearing his story of determination, you walked away a better person,” Miller Place Superintendent of Schools Marianne Cartisano wrote in a statement. “He left you with the lasting impressions that made you want to be more tolerant, kinder, more understanding and compassionate toward others. His fight against the devastation of ALS left you inspired, knowing him filled your heart and being in his presence left you humbled.” 

ALS Ride For Life Talks Future Efforts

Despite the passing of its founder and leader Chris Pendergast, ALS Ride for Life isn’t thinking of slowing down anytime soon.

Manzoni said the organization wants to continue its fundraising efforts, starting with himself getting on a bike later this month and hitting the road, going to school districts they have visited before the pandemic. He plans to spend enough time at each to wave to children and “hopefully greet someone who has supported our program and to say ‘thank you’ to them, give them banner in recognition.” The organization has also developed a revised packet on how, even during a pandemic, people can support ALS over the school year.

“ALS is not going away, and we have to continue the fight,” he said.

There are even talks of doing a documentary film on Pendergast’s life, something Manzoni said the organization is wholeheartedly all for.

Weisman, still an active member of Ride for Life, said one of his last conversations he had with Pendergast was “to keep going until we found that cure for ALS,” he said. “He firmly believed, as I do, that there’s a major breakthrough coming somewhere around the corner … it’s up to us to finish it.”

Weisman added that while the pandemic has made their normal school trips much more difficult, they have some preliminary ideas to host online talks instead.

“Chris laid down 28 years of work,” he said. “Now it’s up to us.”

The family requests donations be made to ALSrideforlife.org and Hope House Ministries at HHM.org.

Chris Pendergast celebrates his 70th birthday at 89 North Music Venue in Patchogue with family and friends. Photo by Elliot Perry

By Chris Pendergast

On a cold rainy Columbus Day, my life forever changed. Nothing would be the same. The life I knew ended. My wife, children and I embarked on a new road, one less traveled by. That has made all the difference.

During the Columbus Day weekend of 1993, I was diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease. Most people now know it is an incurable and uniformly fatal disease. Average life expectancy still hovers near the two or three-year mark. Lucky ones can live longer. A rare few survive longer than 10 years.

Remarkably, l am entering my 27th year with my unwanted road companion. I am here today due in large part to my loving wife, Christine, and our wonderful kids, Melissa and Buddy. They keep me well cared for and motivated. They have, literally, gone the extra mile for me. My grandson Patrick is the most effective medicine I take. My son-in-law Rich and step-grandson Ryan round out my terrific family.

I am blessed with caring, competent and compassionate caregivers, Tiana, Amanda, Marquita and Lena. They are in the trenches every day and night battling right beside and fighting the good fight with me. I am fortunate to have an outstanding mental health therapist, Dr. Melnekoff. He has kept me balanced, focused and headed in the right direction. My life is extended through the phenomenal care provided by my incredible respiratory therapist, Monty Rivera from Millennium. I receive expert medical treatment at the ALSA Clinic, which bears my name at Stony Brook University Hospital. Marvelous friends surround me and help with so many things to make our life easier. My ALS Ride for Life charity has countless volunteers led by staffers Maureen and Marilyn. Because of all their collective work, we have raised more than $8.5 million.

Along the road with ALS, I witnessed amazing things and met incredible people. I was able to participate in wonderful experiences which otherwise would not have happened.

Do I wish I never got ALS? Honestly, I am not sure. I am certain that at some point in almost everyone’s life, a fatal disease will arise. The timing and circumstances vary but the ending does not. I have no corner on the market — everyone will get a turn. My turn came earlier than expected and became more public.

It has been a great life so far. I wonder what new adventures and joys lie around the bend. Besides the joys to come, there are also the challenges and corresponding sorrows. However, I have faith and optimism that everyone one in my life will collectively help me triumph.

To paraphrase Gehrig’s farewell speech at Yankee Stadium, as he did, I also say, “Look at these grand people. Which of you wouldn’t consider it the highlight of his life just to associate with them for even one day? Sure, I’m lucky. Today I consider myself the luckiest man on the face of this earth.”

Chris Pendergast, 70, is a former Northport teacher, who lives in Miller Place. He is the founder of ALS Ride for Life, the Stony Brook University-based nonprofit dedicated to raising awareness about ALS, funding research and providing patient services.

Chris Pendergast enjoys his 70th birthday bash at 89 North Music Venue in Patchogue with family and friends. Photo by Elliot Perry

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

Chris Pendergast and his wife, Christine, with their grandson Patrick Scali. Photos by Elliot Perry

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.

The Pendergasts enjoy the party at 89 North Music Venue. Photo by Elliot Perry

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.

by -
0 103
Participants dump buckets of ice water over their heads during last year’s event. File photo by Erika Karp

This challenge can’t get much colder, and for the second year in a row, Mount Sinai is looking for help icing amyotrophic lateral sclerosis.

Last year, 500 participants from all over the North Shore came out to Heritage Park in Mount Sinai for the Ride for Life Ice ALS challenge, to raise money to help spread awareness and find a cure for ALS.

The disease affects nerve cells in the brain and spinal cord, causing motor neurons to degenerate. People with the disease lose control over their muscles, leaving them unable to speak, eat, move or breathe on their own.

With events like the one at Heritage Park, people all over the world have brought attention to ALS, and on Aug. 26, Mount Sinai is doing it again.

Game booths, face painting, balloon twisting, dunk tanks and pie tosses are just a few of the events listed for Wednesday’s ice bucket challenge. Admission to the event, which begins at 5 p.m., is free, and T-shirts and other ALS awareness items will be available for purchase. Hot dogs, cotton candy and soda will also be available, as well as a limited supply of buckets.

To help support the cause, create a team or collect pledges for the Big Dump, which will begin promptly at 7 p.m.

“Last year, more than 500 people participated in the challenge and I expect to see a bigger crowd this year,” Councilwoman Jane Bonner (C-Rocky Point) said in a press release. “We need all the help we can get from friends, family, businesses, sports teams and more to come together so we can find a cure for ALS.”

Paper pledge forms can be found on www.alsrideforlife.org. In the event of bad weather, a rain date is scheduled for Sept. 2. Email [email protected] or go to Facebook’s ALS Ride for Life page for more information.