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Ride for Life

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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.

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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.”

 

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Photo from Christine Pendergast

Reviewed by Jeffrey Sanzel

The name of the book is Blink Spoken Here. It is written by Dr. Christopher Pendergast and Christine Pendergast of Miller Place.

That’s really all you need to know.

That, and please buy the book.

Blink Spoke Here. Dr. Christopher Pendergast and Christine Pendergast.  Buy the book.

You don’t need to finish reading this review.

You just need to buy the book.

Blink Spoke Here. Dr. Christopher Pendergast and Christine Pendergast.  Please buy the book. Now.

For those who want to know more …

It is easy to say that this is an important book — because it is. It is about exceptional bravery in the face of unfathomable adversity.  It is about a man who has defied the odds and lived with one of the single most difficult and devastating diseases:  ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. Emphasis on lived with. It is told in his words, with the assistance of his wife.

Authors Dr. Christopher Pendergast and Christine Pendergast

The title refers to how he wrote the book, with an eye-controlled device, as he does not have the use of his hands or his voice. His journey began with the diagnosis in 1993 and continues to this very day — to the very moment that you are reading this sentence. The average lifespan with ALS is two to five years; Dr. Pendergast has survived for twenty-seven. There is no medical answer as to why. But perhaps the Universe has chosen him for bigger reasons. Two of them? First: his bringing awareness to this monstrous affliction through his inspirational Ride For Life. Second: He has written this book.

In 1993, Dr. Pendergast had been a teacher for twenty-three years, married to his childhood sweetheart, Christine.  At the time of his diagnosis, he was in the Northport school district, and he continued to teach in the classroom for as long as possible. When that was no longer an option, he continued as a teacher for the world. Blink Spoken Here is a portrait of a teacher in the best sense of the word.  His passion to impart knowledge has infused his entire life.

Beginning with a description of the disease’s arc, he brings us into his world:

“It was not a dramatic event like a building collapse but a more steady deterioration similar to a bridge failure. I was imploding. In 1993, my physical presence began shrinking before my very eyes. My contact with the world was severing, one function at a time.  Angry, scared and saddened I was like a stubborn mule fighting with tenacity for each inch I surrendered. First it was dressing, followed by grooming, driving, toileting, walking, feeding, and breathing. Now I cling to my last vestiges of talking. It forced me retreat towards within. The exterior husband, father, and friend was left behind.”

Dr. Pendergast is unflinching in his brutal honesty about the pains and the challenges. He shares some of the darkest moments in his life. But, just as often, he speaks of hope and appreciation and deep faith. Many of the simplest things that we take for granted have been taken from Dr. Pendergast.  And yet, in all of this, he manages to find not just the good in life but the lessons that are offered every day. 

If these are not good enough reasons to read this book (and they should be), it is also a beautiful piece of writing. Dr. Pendergast writes with extraordinary eloquence and sincerity, with humor and insight. His prose is exquisite. He shares anecdotes and parables, free verse and personal accounts. The craft is equal to the art and both are worthy of the humanity that created it.

The memoir is split into two sections.  The first focuses on his coming to terms with the disease and its myriad challenges. (The first half even concludes with a wicked send-up of Dr. Seuss.)

The second half of the book focuses on the Ride for Life, which began in 1998 as the Ride to Congress. It follows his goals of bringing national awareness to ALS as well as an increase in services, knowledge, and fundraising. Taking his cue from the activism of the late 1960’s and early 1970’s, he finds his inspiration:

“For me, the remarkable results of these movements underscored the power of choosing to make a difference. The activists of those movements did more than complain about these wrongs; rather they opted to fight for change.  This activism formed a model in my subconscious. I followed this model 40 years later.” 

The initial support of his home school in Northport proves that it takes a village — or at least a district. Over the years, the Ride has evolved and has focused its activities in New York and Long Island.

From the “weight of secrecy” to his global advocacy, this is an odyssey that is both far-reaching and personal. His love for his wife and family and for his community comes through at every turn. This is a man who does not curse the darkness but moves towards the light. 

“Life is too short to spend wishing things were not so. Things are what they are. Some occurrences are not our choice. However, we do choose how to respond. We decide how to live the life we get.”      

There are too many incredible moments to enumerate. Even the description of the challenge of opening an envelope is a revelation. There is a particularly telling incident with his son and church. It is a lesson in forgiveness and perspective, and its reverberations reflect his own continuing journey.

The final chapter, entitled “The First Amendment,” is a crushing account of his loss of the ability to speak: “To the educator, the voice is a powerful tool. It commands respect, informs and on occasion, inspires. The voice becomes our signature for the world. Losing it is catastrophic.” 

Dr. Pendergast describes the gradual decline in his vocal power and the various methods of communication. His frustration is honest and palpable just as his deep belief that his and all voices should be heard in one form or another.  He advocates for those who are desperately ill with ALS and that this basic human right should not terminate at the hospital door.

“Speech is freedom. Communication is the connection to the outside world. We all have a right to be heard … I want to be able to speak, even if it is only one blink at a time.” 

This chapter brilliantly closes the book. Because while he may have lost the physical voice, his spiritual voice continues. It is powerful. It commands respect. It informs. And, truly and always, it inspires.

Once again.

Blink Spoken Here. Dr. Christopher Pendergast and Christine Pendergast.

Don’t wait. Please buy this book. Now.

Blink Spoken Here: Tales From a Journey Within (Apprentice House Press) is available at Book Revue in Huntington, Amazon.com and BarnesandNoble.com.

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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.

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Members of the Comsewogue High School girls varsity and junior varsity field hockey team dump water on themselves at the second annual ALS Ice Bucket Challenge on Wednesday Aug. 26. Photo by Giselle Barkley

As the president of the Port Jefferson Station Teachers Association, Beth Dimino is rarely hit in the face with whipped cream. But on Aug. 26, Dimino sat wearing a large black garbage bag as whipped cream from a pie toss dripped down her face and body — all in support of the second annual ALS Ice Bucket Challenge at Heritage Park in Mount Sinai.

Hundreds of people attended the event, which aimed to raise awareness of amyotrophic lateral sclerosis and money for research into the disease, through the Stony Brook-based organization Ride for Life. People who purchased a ticket could trade it for a chance to throw a whipped cream-filled plate at volunteers like Dimino.

Councilwoman Jane Bonner (C-Rocky Point) was one of many, including local school principals and teachers, to participate in the event’s dunk tank or pie-throwing games. For Bonner, supporting the cause is important, as her grandfather died from the rare disease around 35 years.

“It robs your body, not your mind,” Bonner said.

ALS 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. The cause of the disease is not yet known.

Bonner jumped at the chance to participate in the event this week.

“Chris just makes you want to [be involved],” she said about Christopher Pendergast, who founded Ride For Life in 1997 and has lived with the disease for more than 20 years. “He just inspired so many people to participate and bring awareness.”

According to Ray Manzoni, a member of the Ride For Life Board of Directors, Pendergast wanted to make this year’s event at Heritage Park bigger and better than last year’s ice bucket challenge, which focused on the ice bucket challenge itself.

Last year’s event occurred during the height of a worldwide trend in which people dumped buckets of ice water over their heads, and challenged others to follow suit, in order to bring publicity to the disease. Lori Baldassare, president of the Mount Sinai Heritage Trust, Bonner and Legislator Sarah Anker (D-Mount Sinai), all of whom attended this year’s event, were “instrumental in getting [the event] approved quickly” last year, according to Manzoni. That inaugural event was organized in four days.

Manzoni said this year they added the pie-tossing event, balloon twisting and face painting booths, cotton candy, hot dogs and more.

The Comsewogue girls’ varsity and junior varsity field hockey teams were also at the event. While many of them were dancing to the music there, they also donated money and helped organize the buckets for people to dump water on themselves or others during the ice bucket challenge. The buckets were arranged at the end of the event to spell out “ICE ALS.”

“The goal is to have this and other events that Ride For Life supports and make them bigger and better,” Manzoni said.

Although he did not know how much money the group raised this year, Manzoni hoped it matched or exceeded the amount of money raised last year, $5,000. He added that successful research into ALS can also help research for Alzheimer’s and Parkinson’s disease, which are more common but have similarities.

According to the ALS Association’s website, the disease affects around 6,400 people annually in the United States alone. Only 10 percent of people who are diagnosed with the disease inherited it, while the rest are affected by the disease at random.

For people and organizations like Ride For Life, these events are important.

The goal is “to build awareness and money so that we can continue [our efforts],” Manzoni said.

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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.

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