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Chris Pendergast

Chris Pendergast celebrates his 70th birthday in April 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.