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Chris Pendergast

The Pendergast family admires the new sign. Photo by Julianne Mosher

The corner of Grandview Boulevard and Lower Rocky Point Road in Miller Place will now have a sign saying Pendergast Path in honor of the street’s former resident and founder of ALS Ride For Life. 

Local officials, friends and family joined together on Monday, June 21, next to the street sign to remember Pendergast’s legacy and honor his efforts in the fight against amyotrophic lateral sclerosis — a degenerative neurological disease that ultimately leads to a loss of muscle control throughout the body, also known as Lou Gehrig’s disease. Monday was Global ALS Awareness Day.

“What a beautiful day to have this event,” said Ray Manzoni, president of ALS Ride For Life. “We’ve got somebody up there keeping an eye on us.”

Chris Pendergast’s grandson had the honor of unveiling the new sign. Photo by Julianne Mosher

Pendergast died on Oct. 14, 2020, after a 28-year battle with the disease. His nonprofit has helped raise more than $10 million in research for ALS. 

During the annual Ride For Life, Pendergast was known to ride his motorized wheelchair hundreds of miles to raise funds and awareness of the disease. His longest ride was 350 miles in two weeks.

“He defied the odds in so many ways, his endurance was remarkable,” Manzoni said. “He was extraordinary.”

Pendergast, a former teacher in the Northport school district, was told he only would have a few years to live after his diagnosis. He beat the odds and spent over two decades educating people on the disease and devoting his life to helping others. 

His daughter, Melissa Scriven, told the crowd of people that the ALS Ride For Life board started in their house on Grandview Boulevard. Team meetings were held in the kitchen, and the dining room became an office. In 1991, the family moved to the street and two short years later he was diagnosed.

“Our lives were forever changed — dreams for this new house and our new life were shot,” she said. “But only briefly … his positive attitude and optimism shaped how we would handle this ALS diagnosis. We were a team and we’re going to live with this disease — and live we did.”

Scriven said her father adored this house. 

“It’s quite fitting that he lived on Grandview Boulevard,” she said. “My dad would for sure say that he was blessed with a grand view of the goodness of humanity, of the loyalty of friends, of the generosity of strangers and the grandest view of all, the love of his family.”

As part of a street renaming, the Town of Brookhaven requires an individual to have provided the town with an outstanding service. 

And that he did. 

Councilwoman Jane Bonner embraces Christine Pendergast. Photo by Julianne Mosher

Councilwoman Jane Bonner (R-Rocky Point) presented the Pendergast family with a proclamation from the town shortly before the curtain unveiled Pendergast Path. Bonner said she had a special connection to the day’s event. 

“My grandfather died from ALS in the early 1980s, long before anybody really knew what ALS was,” she said. “I have learned so much about ALS because of Chris, because of this organization and because of the people with ALS that really don’t ever let you forget that this disease should not be forgotten, that we need a tremendous amount of research dollars.”

She added there is a lot of time to make up due to the COVID-19 pandemic. 

“People need to be as generous as possible because there are many more people suffering and so we must find a cure,” she said. “And I can think of no person that deserves this honor more than Chris.”

Pendergast’s wife, Christine, was honored to have her husband’s name across the green sign. 

“I think he would be grinning ear to ear,” she told TBR News Media. “He took his ALS bike to the streets, literally, and we now have a street named after him. I think it’s a very fitting way to honor him and his work.” 

Chris Pendergast passed away last October at the age of 71. Photo from SB

By Melissa Arnold

Each year, 5,000 people in America lose their lives to amyotrophic lateral sclerosis (ALS), a degenerative neurological disease that ultimately leads to a loss of muscle control throughout the body. Beloved Yankee first baseman Lou Gehrig and physicist Stephen Hawking were well-known for their public struggles with ALS, which often carries a hefty price tag because of the necessary medical care, home equipment and renovation.

Elizabeth Hashagen

The prognosis is unfortunately grim for all who are diagnosed with ALS, with most living less than five years after diagnosis. But some do achieve surprising longevity. Among them was Chris Pendergast, a Suffolk County educator and literal trailblazer who dedicated 27 years of his life to ALS awareness before his death last year.

In 1997, Pendergast founded ALS Ride for Life, a charitable organization known for its annual treks to raise awareness and funding for people with ALS, nicknamed “PALS.” The first Ride for Life in 1998 took more than two weeks as PALS in motorized wheelchairs journeyed from Manhattan to Washington, D.C.

These days, the organization has a more local focus and the ride itself is shorter, covering Long Island only. But regardless of the changes, it was always Pendergast leading the way.

Each year, Ride for Life hosts a benefit honoring those with ALS and others who have made major contributions in the search for a cure. This year’s benefit, held virtually on April 28, will honor Pendergast’s great legacy as the organization looks to the future.

“Chris would want us to have fun as we remember him and to keep on enjoying life,” said Ray Manzoni, chairman and president of Ride for Life. “We want to make sure that the arrow that Chris launched all those years ago continues to fly. He created so much hope, and we still have work to do.”

The event will feature appearances from an eclectic group of performers with a little something for everyone, Manzoni said. Emmy Award-winning anchor Elizabeth Hashagen of News 12 Long Island will emcee the evening. Performers will include musician Mike DelGuidice (on tour now with Billy Joel), comedian Bob Nelson and father-son Tik Tok duo Joe and Frank Mele.

Clinton Kelly

Also appearing for interviews and audience questions are former MLB pitcher and Yankees commentator David Cone; executive producer Elise Doganieri of the CBS reality hit “The Amazing Race,” and TV personality Clinton Kelly.

Kelly, who is best known for his long-running tenures on “What Not to Wear” and “The Chew,” grew up in Port Jefferson Station and graduated from Comsewogue High School. Later in life, he became friends with Christine Pendergast, Chris’ wife of nearly 50 years and a former physical education teacher at Comsewogue.

“[Christine] is a really special person and her marriage to Chris was truly inspirational,” said Kelly, who now hosts “Self-Made Mansions” on HGTV. “Beyond that, a close friend of my family passed away from ALS a few years ago. And so I am happy to bring attention to this disease in any way that I can, as well as raise funds for patient care. I’m hopeful that scientists can find a cure for this debilitating disease sooner than later.”

Chris’ son, 36-year-old Buddy Pendergast, was in the third grade when his father was diagnosed with ALS.

“As a family unit we were definitely put on an entirely different life path,” he recalled. “When my dad came to see that his progression was remarkably slower than other people with ALS, he very naturally turned his energy toward advocacy, just as he had in the past for other causes he was passionate about, particularly education and the environment.”

Mike Delguidice

To date, Ride for Life has raised more than $10 million in funding for research and support, and the organization’s efforts were instrumental to the creation of the Christopher Pendergast ALS Center of Excellence at Stony Brook University Hospital. But Buddy also admitted his dad would have mixed feelings about the benefit focusing on him this year.

“To be honest, he would have rather focused on other people instead … He was more compelled than anyone I’ve ever met to make a difference, even if it was just for a small community. Ride for Life became one of the most influential ALS organizations, and it’s very much like an extended family, not just one person,” he said. “It’s about remaining hopeful and optimistic in what the future holds. He envisioned a future where all of our hard work will pay off to make ALS a thing of the past.”

The 24th Annual Ride for Life Honoree Recognition Benefit will be held virtually beginning at 7 p.m. on April 28. The event is sponsored by TFCU, Symbio Research, Quontic Bank and The Rohlf Family. Individual tickets are $25, household watch party $100. To buy tickets, participate in raffles or donate to the cause, visit http://one.bidpal.net/alsrfl. To learn more about Chris and ALS Ride for Life, visit www.alsrideforlife.org. For further information, call 631-444-1292.

Ray Manzoni Photo from ALS Ride for Life

The ALS Ride for Life board of directors unanimously appointed Ray Manzoni as president of the organization.

Manzoni, of Miller Place and proprietor of Manzoni Real Estate located in Mount Sinai, replaces Chris Pendergast, a beloved community member and founder of the nonprofit, who died of amyotrophic lateral sclerosis in October after a 28-year-long battle.

But Manzoni said Pendergast’s legacy will live on, and he’ll be there to help see the organization through.

When ALS Ride for Life was incorporated back in 1997, Manzoni stood alongside Pendergast — a man he became good friends with. 

“We had been friends for years before he was diagnosed. Then he sucked me in and here I am 28 years later,” he laughed. “I knew him well. I knew his mind. He taught me well.”

While Pendergast was still alive and spreading awareness on ALS (often referred to as Lou Gehrig disease), the new president served on the board of directors, eventually — and currently — as board chairman. 

“Chris was a nationally known leader in the world of ALS,” Manzoni said. “I was proud to be his friend. I look forward to continuing his mission and that of our organization toward providing patient services, awareness and supporting research so that a cure can one day be found.”

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 the disease for 28 years. When doctors diagnosed him, they thought he only had a few years to live. He lived to be 71.

Pendergast 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.

The ALS Ride for Life 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.

“His story still resonates,” Manzoni said. “ALS is not gone.”

The new president is looking forward to keeping Pendergast’s legacy alive. 

“We fortunately have this great team,” he said. “We held it all together and are refining in these COVID times.”

Known to visit schools and give presentations on the disease, the group had to change shape to get their word out, while adhering to coronavirus guidelines. But he is asking people to continue supporting their local nonprofits. 

“The kids want this, administrators want this,” he said.

Local residents cheered on Chris Pendergast as an old pickup truck brought him to his final resting place on his last ride. Photo by Julianne Mosher

Chris Pendergast, a Miller Place resident and founder of ALS Ride for Life, died Oct. 14. He survived 28 years with amyotrophic lateral sclerosis when most only live for five. In that time, he created an organization that has raised millions for ALS research and awareness.

He was renowned in the community for his annual rides, originally from Yankee Stadium to Washington D.C. and later from Riverhead to the Bronx to help fundraise for his organization.

Local residents say Chris touched the lives of everyone he met. Photo by Julianne Mosher

When Pendergast’s funeral Mass ended around 11:30 a.m. Monday, Oct. 19, police escorted a line of Pendergast’s loved ones and his casket down Route 25A to Washington Memorial Park Cemetery in Mount Sinai, something friends and family designated “his last ride.”

People who had been touched by the late ALS activist lined the street cheering him on and saying their last goodbye. 

Some people knew Pendergast for decades, some knew him for only a year. But nonetheless, even in a short amount of time he made his mark. Several lined up on Route 25A in Miller Place to pay their respects.

“He’d be touched to see everyone here,” Miller Place local Patricia Poggio said. “He was also humble, but he would be really touched.”

Nancy Murray, another Miller Place resident, agreed, saying Pendergast was “a warrior” for ALS and for her friend who was also diagnosed with the disease. 

“What a wonderful man,” Murray said. “What an amazing, wonderful man.”

Jack Soldano, a 16-year-old Miller Place student, holds his own fundraiser, Comics for a Cause, to also help raise funds for ALS Ride for Life after being moved by Chris’ story. Photo by Julianne Mosher

Jack Soldano, a 16-year-old Miller Place student, said he met Pendergast in one of the Ride for Life founder’s visits to his school. Soldano had created a fundraiser, Comics for a Cause, in 2017 to help support ALS Ride for Life after being moved by Pendergast’s story. His fundraiser also supported the Miller Place-Mount Sinai Historical Society.

“I’ve had my nose in a comic book since I was little,” he said. “So I know a superhero when I see one.”

Kathy Sweeney, who knew Pendergast through St. Louis De Montfort R.C. Church in Sound Beach, agreed that he made his mark. 

“He encouraged people all over the world,” she said. “God left him on this Earth for all these years to help people. He was such a role model.”

 

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.

The community came out to wish Chris Pendergast a happy birthday last Tuesday. Photo courtesy of ALS Ride for Life Facebook

By Fr. Francis Pizzarelli

Father Frank Pizzarelli

The summer is fast approaching. The pandemic continues to paralyze the world and our country. However, there genuinely is a spirit of hope that is emerging. 

People need to stay focused. Unfortunately, the mixed messages coming from Washington make it difficult at times for people to believe. We should not get distracted by their incompetence. Listen to the professional voices who know, who are reminding us to be cautious, careful and respectful.

In the midst of all of this chaos and craziness how blessed we are with the random acts of kindness emerging all over the country in every state of our union. Locally, there have been countless signs of gratitude to our medical community and their support staff, to our first responders, EMS workers and our police. We are grateful to those that are staffing our food stores and other essential services, risking their lives every day so that our lives might be safe and reasonable.

There will be a time in the future where we will look back upon this pandemic and be mindful of the life lessons it has taught us. This virus was not man-made; it came upon us because of our planet. It is a powerful reminder that we need to be more attentive to the environment and environmental issues. We need to be conscious not to senselessly pollute the air and our water. We need to be mindful of climate change and global warming and act sensibly to protect the earth and the lives of future generations.

One of the powerful life lessons we need to reflect upon is we are America, not the people who we have elected. It is time for us to lead, to stand up, to be counted and to challenge the bureaucrats to build bridges and not walls; to bring us together like so many ordinary Americans have done across the country during this time of crisis. 

I have been inspired and encouraged by the powerful witness and example of ordinary Americans sharing, caring and reaching beyond themselves to help others and expecting nothing in return!

On April 28 more than 100 cars, motorcycles and bicycles gathered in the parking lot of the North Country Road School in Miller Place. This spontaneous caravan of people of all ages and from all places came to celebrate the birthday of a very courageous man within our community, Dr. Christopher Pendergast. He is a teacher, a scientist, a researcher, a writer and a powerful symbol of hope in a world that often hovers in despair. We gathered on that Tuesday to celebrate his 71st birthday. Twenty-eight years ago he was diagnosed with ALS. He wasn’t expected to live but just a few years. His courage, his tenacity and his love of life have sustained him during these past challenging years.

Today, although very disabled, he continues to be a beacon of hope for all of us who are privileged to know him and spend time with him. He continues to raise our consciousness about the importance of ALS research and leads by example. How fitting for this spontaneous caravan with signs and balloons to surprise him and drive past his house to say thank you for his gift of life! That’s the real America I believe in.

Fr. Pizzarelli, SMM, LCSW-R, ACSW, DCSW, is the director of Hope House Ministries in Port Jefferson.

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.

Ride For Life presents CSHL with $300,000 for ALS research: from left, CSHL Director of Annual Giving and Donor Relations Karen Orzel, CSHL Assistant Professor Molly Hammell, Ride for Life Founder Chris Pendergast, Stony Brook Associate Professor Josh Dubnau and Ride for Life board member Frank Verdone. Photo by Jessa Giordano, Cold Spring Harbor Laboratory

By Daniel Dunaief

The past can come back to haunt us, even in the world of genetics. Over the course of millions of years, plants and animals have battled against viruses, some of which inserted their genes into the host. Through those genetic struggles, explained Molly Hammell, an assistant professor at Cold Spring Harbor Laboratory, cells develop “elaborate ways to fight back,” even as they continue to make copies of these pieces of DNA.

Sometimes, when our defenses break down, these retrotransposons, or jumping genes, can become active again. Indeed, that appears to be the case in a fly model of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

Working on a fruit fly model of ALS, Joshua Dubnau, an associate professor at Stony Brook University, Lisa Krug, who earned her doctorate at Cold Spring Harbor Laboratory and is now working at Kallyope in New York, and Hammell showed that these ancient genetic invaders play an important role in the disease amid activation by a protein often linked to ALS called TDP-43.

A recent study, published in PLOS Genetics, “really proves that retroviral reactivation (as a consequence of TDP-activity) is … central to either causing or accelerating neuronal cell death when TDP-43 inclusions are present,” explained Hammell in an email. If TDP-43 plays the same role for humans, this would suggest that targeting this protein or the jumping genes, it activates could lead to potential treatment for ALS.

These collaborators showed that an aggregation of this protein turned on jumping genes. These genes can make copies of themselves and insert themselves in other parts of the genetic code. In this case, TDP-43 expression disrupts the normal immune-like system that silences retrotransposons such as gypsy, which is a particular type of jumping gene in the fruit fly.

When gypsy was activated, the fruit fly exhibited many of the features of ALS, including protein pathology, problems with movement, shortened life span and cell death or glia and neurons in the brain. The scientists were also able to turn gypsy off, which improved the health and extended the life span of the fly.

Mimicking this protein results in broad activation of several retrotransposons. If this also occurs in people, the disease may activate a retrotransposon that is the human analog to gypsy, called HERV-K, as well as other retrotransposons. The study also suggests that DNA damage caused by retrotransposons may active a cell suicide mechanism. Finally, this effort showed a means by which the protein disrupts the normal immune surveillance that keeps retrotransposons quiet.

To be sure, Dubnau cautioned that animal models of a disease may not translate when returning to people. Researchers need to look at more patients at all the retrotransposons in the human genome to monitor its prevalence, Dubnau suggested. If the link between retrotransposon activation and the development of ALS is as evident in humans as it is in the fruit fly, scientists may take an approach similar to that which they took to battle the human immuno-deficiency virus, or HIV. Retrotransposons have an RNA genome that needs to be copied to DNA. This, Dubnau explained, is the step in the process where researchers attacked the virus.

In a small subset of HIV patients who have motor neuron symptoms that are similar to ALS, Avi Nath, a senior investigator at the National Institutes of Health discovered that treating patients with the typical HIV medication cocktail helped relieve their ALS symptoms as well.

“What is not known is whether, for some reason, this subset of patients had an ALS syndrome caused by HIV or they were curing them” by treating HIV, Dubnau said. Nath is currently involved in one of two clinical trials to see if HIV medications help ALS patients. The next step for Dubnau and Hammell is to screen the tissue of numerous ALS patients after their death to see if their retrotransposons were elevated.

In addition to NIH funding, the scientists received financial support from Ride for Life, which is a not-for-profit organization started in 1997 that raises funds for research to find a cure for ALS, supports patients and their families through patient services and raises awareness of ALS. Every May, Ride for Life conducts a 12-day, 100-mile patient wheelchair ride across Long Island. Dubnau and Hammell, who received a $300,000 grant from Ride for Life in 2015, said they have been inspired by Ride for Life founder Chris Pendergast.

Meeting Pendergast “has had a big impact,” Dubnau said. “He’s a force of nature. He’s an incredibly strong and intelligent person.” Receiving funds from Ride for Life created a sense of personal obligation to Pendergast and many other people who “had raised that money through sweat and effort.”

Without funding from the Ride for Life Foundation, “We would not have the resources to obtain these samples and do the sequencing experiments necessary to prove that this is a clinically relevant phenomenon in a large number of ALS patients,” Hammell said.

Through an email, Pendergast explained that Ride for Life chose to fund the work by Dubnau and Hammell because the research met several criteria, including that it might lead to new strategies to treat ALS and the research was on Long Island, which is a “powerful affirmation for our generous donors.”

Pendergast emphasized the importance of funding basic ALS research. “We need to know why it develops, how it progresses [and] how it can be diagnosed and monitored,” he urged.

A resident of Huntington, Dubnau and his wife Nicole Maher, who works at the Nature Conservancy as a climate scientist, have a nine-year-old daughter, Caitlin. Reflecting both of her parents’ professional interests, Caitlin is going to a statewide science fair, where she is presenting her work on how temperature affects the life span of insects.

As for his research, Dubnau hopes a further exploration of TDP-43 might reveal an important step in the progression of ALS. He hopes this discovery may suggest a strategy researchers and clinicians can take that might “stop the cascade of events” in ALS.