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From left, Nilanjan Chakraborty, Associate Professor in Mechanical Engineering at SBU and IV Ramakrishnan, Professor of Computer Science, demonstrate how CART could hold a cup and move its arm. Photo by John Griffin/SBU

By Daniel Dunaief

Caretakers of those with Amyotrophic Lateral Sclerosis (or “Lou Gehrig’s disease”) have an enormous responsibility, particularly as the disease progresses. People in the latter stages of the disease can require around-the-clock care with everything from moving their limbs to providing sustenance.

IV Ramakrishnan, Professor of Computer Science and an Associate Dean in the College of Engineering and Applied Sciences at Stony Brook University, recently received a $1.5 million grant from the U.S. Army to lead a team that is building a Caregiving Robot Assistant, or CART, for ALS patients and their caregivers. 

The grant, which is for three years, will cover the cost of building, testing and refining a robot that a caregiver can help train and that can provide a helping hand in challenging circumstances.

Using off the shelf robot parts, Ramakrishnan envisions CART as a robotic arm on a mobile base, which can move around and, ultimately, help feed someone, get them some water and help them drink or open and close a door. They are also developing a special gripper that would allow the robotic arm to switch a channel on a TV or move a phone closer.

In working through the grant process, Ramakrishnan emphasized the ability of the robot, which can learn and respond through artificial intelligence programs he will create, to take care of a patient and offer help to meet the needs of people and their caregivers who are battling a progressive disease.

“As the needs evolve, the caregiver can show the robot” how to perform new tasks, Ramakrishnan said.

The project includes collaborators in Computer Science, Mechanical Engineering, Nursing, the Renaissance School of Medicine, and clinical and support staff from the Christopher Pendergast ALS Center of Excellence in the Neuroscience Institute at Stony Brook Medicine.

At this point, Ramakrishnan and his team have sent out fliers to recruit patients and caregivers to understand the physical challenges of daily living. 

Ramakrishnan would like to know “what are the kinds of tasks we should be doing,” he said, which will be different in the stages of the disease. They know what kinds of tasks the robot can do within limits. It can’t lift and move a heavy load.

Once the team chooses the tasks the robot can perform, they can try to program and test them in the lab, with the help of therapists and students from the nursing school.

After they develop the hardware and software to accomplish a set of actions, the team will recruit about a dozen patients who will test the robot for one to two weeks. Members of the ALS community interested in the project can reach out to Ramakrishnan by email.

A biostatistician will be a part of that group, monitoring and calculating the success rate.

At this point, the development and testing of the robot represents a pilot study. After the group has proven it can work, they plan to submit a follow up proposal and, eventually, to apply for approval from the Food and Drug Administration.

Ramakrishnan estimates the robot will cost around $30,000, which is about the same cost as a motorized wheelchair. He is unsure whether Medicare will cover this expense.

As a part of the development, Ramakrishnan recognizes that the first goal, similar to the Hippocratic Oath doctors take, is to do no harm. He and his team are incorporating safety features that make the robot withdraw automatically if it gets too close to someone.

A key part of the team

Members of the CART team: Vibha Mullick, and her husband, ALS patient Anuraag Mullick, are in the center. Back row, from left: Clare Whitney, Nilanjan Chakraborty, Theresa Imperato, C.R. Ramakrishnan, and Wei Zhu. Front row, from left, are Maria Milazzo and I.V. Ramakrishnan. Photo by John Griffin

Vibha Mullick, a Senior Web and Database Analyst in Computer Science and resident of South Setauket, will be a key team member on the project.

Mullick has been caring for her husband Anuraag Mullick, who is 64 and was diagnosed with ALS in 2016. Anuraag Mullick is confined to a wheelchair where he can’t swallow or breathe on his own.

“My husband also wants to participate” in the development, said Mullick, who spends considerable time reading his lips.

Caring for her husband is a full-time job. She said she can’t leave him alone for more than five or 10 minutes, as she has to suction out saliva he can’t swallow and that would cause him to choke. When she’s at work, a nurse takes care of him. At night, if she can’t get a nurse, she remains on call.

If her husband, who is in the last stage of ALS, needs to turn at night, use the bathroom or needs anything he makes a clicking sound, which wakes her up so she can tend to his needs.

 “It tires me out,” Mullick said. In addition, she struggles to take care of typical household chores, which means she can’t always do the dishes or wash the laundry. She suggested a robot could help caregivers as well as ALS patients.

In the earlier stages of ALS, people can have issues with falling. Mullick suggests a robot could steady the person so they can walk. She has shared the news about the project with other members of the ALS community.

“They are excited about it and encouraged,” she said. 

Origin of the project

The idea for this effort started with a meeting between Ramakrishnan and the late Brooke Ellison, a well-known and much beloved Associate Professor at Stony Brook University who didn’t allow a paralyzing car accident to keep her from inspiring, educating and advocating for people with disabilities.

Encouraged by SBU Distinguished Professor Miriam Rafailovich, who was a friend of Ellison’s, Ramakrishnan met with Ellison, whose mother Jean spent years working tirelessly by her side when she earned a degree at Harvard and worked at Stony Brook.

Ramakrishnan, who developed assistive computer interactions technologies for people with vision impairments, asked Ellison what a robot arm could do for her and mean for her. 

He recalled Ellison telling him that a robot arm would “transform my life,” by helping feed her, set her hair, or even scratch an itch.

“That moved me a lot,” said Ramakrishnan.

While CART will work with one population of patients, it could become a useful tool for patients and their caregivers in other circumstances, possibly as a nursing assistant or for aging in place.

Road to Stony Brook

Ramakrishnan, who is a resident of East Setauket, was born in Southern Tamil Nadu in India and attended high school in what was then called Bombay and is now Mumbai.

He earned his undergraduate degree from the Indian Institute of Technology and his PhD from the University of Texas at Austin.

Ramakrishnan is married to Pramila Venkateswaran, an award-winning poet and is retiring this summer after 33 years as a Professor of English at Nassau Community College. The couple has two grown children, Aditi Ramakrishnan, who is a physician scientist at the Washington University in St. Louis and Amrita Mitchell-Krishnan, who is a clinical pediatric psychologist.

As for the work on CART, Ramakrishnan is eager to help patients and caregivers. The ultimate goal is to “reduce the caregiving burden,” he said.

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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.” 

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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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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.

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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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