Port Jefferson Station resident Brian Muff shares unique insights into local legends through his writing. Photo from Muff
Long Island’s largest lake, and a place of legend, Lake Ronkonkoma was the perfect setting for Brian Muff’s debut young adult suspense novel, Lady of the Lake.
“It’s such a mysterious place that really inspired me to write the book,” he said.
Port Jefferson Station resident Brian Muff shares unique insights into local legends through his writing. Photo from Muff
The 25-year-old Port Jefferson Station man came up with the idea nearly four years ago. While reading up on legends of the lake, he found its stories so intriguing that he decided to write a fictional story around the tales many locals have come to love.
There are several versions of Lake Ronkonkoma and the lady who haunts it.The most common tale is that of a young Native American princess who fell in love with an English settler. Their relationship was kept secret, and depending on the story, one or both of the lovers gets killed.
But the common denominator for all of the legends is that for every year on, the princess haunts the lake and drowns a young man in her murky waters – hoping to find her one true love again.
“I took all of the legends that I’ve heard, and I made my own version of it,” Muff said. In his novel, a teenager named Miley and Braden visit the lake. He’s then dragged underwater by the Lady of the Lake, and with the help of a classmate and his eccentric “mad scientist” father, they devise a plan to reunite the princess with her forbidden lover.
Muff said the novel took about 16 months to write, all while working part-time and working on his MBA at Stony Brook University. Eventually it was picked up by The Word Verve, Inc. who published it last month.
“I’ve gotten a lot of feedback from people who have really enjoyed it,” he said. “Older people that have heard the legend for years, they’re excited to read about it.”
Muff’s interest in local legends and all things paranormal are leading him towards writing more novels down the road. He said there might even be a trilogy bringing Miley and Braden back for another spooky adventure.
“I try to do well-known Long Island landmarks and legends because I feel like people know them,” he said. “They know where the lake is, and it makes it more immediate and impactful for them when they read the book.”
Lady of the Lake can be purchased right now on the publisher’s website. It is also available through Amazon and Barnes & Noble.
At an Oct. 19 press conference announcing a new study to help youth in Paterson, New Jersey, from left, Paterson Mayor André Sayegh; Antoine Lovell; Director of Paterson Youth Services Bureau Christina Barnes Lee; Ijeoma Opara; Program Coordinator at Municipal Alliance Prevention Program Tenee Joyner; Councilman Luis Velez and Chief Operating Officer of OASIS Paterson Jim Walsh. Photo from Ijeoma Opara
By Daniel Dunaief
Stony Brook University’s Ijeoma Opara, a new Assistant Professor in the School of Social Welfare, is starting her promising early scientific career by making history, becoming the first social worker to receive an Early Independence Award from the National Institutes of Health.
Opara, who hopes the award opens doors to other social workers and to other scientists of color, plans to use the funds to create a research study and intervention program that will make a difference.
Opara will study the link between mental heath and substance abuse in Paterson, New Jersey, where she conducted her PhD training while attending Montclair State University and where she hopes to help youth who may not attend school often enough to benefit from programs in academic settings. She also hopes to understand issues that youth may be facing that lead to substance abuse and poor mental health.
Opara plans to use the $1.84 million, five-year grant to conduct venue-based sampling, where she will search for at-risk youth and where she can tailor mental health and substance abuse questions that are relevant to the experience of the children she hopes to help.
“A lot of youth that needed these services, who had substance abuse and serious issues with mental health, weren’t going to school,” said Opara. “They weren’t in locations [where] a lot of researchers collect data.”
It didn’t make sense to collect the survey information from students in school when the people who need these services are not present in the system. “Meeting them where they are to figure out how to get them engaged” became a critical element to conceptualizing this study, said Opara. “There is no such thing as hard-to-reach populations.”
The NIH award Opara received encourages young researchers who recently completed their graduate work to engage in high-risk, high-return studies.
The risk in Opara’s work is that she won’t be able to recruit enough youth. She is, however, is convinced that her past experience in Paterson, a city filled with communities she’s grown to love, will enable her to find and reach out to targeted youth.
She’s currently in the first phase of her two-part effort; finding staff, figuring out ways to find people for her studies and designing questions relevant to them and their lives. In the second part of her research, she plans to provide mental health and substance abuse services.
Michelle Ballan, Associate Dean for Research in the School of Social Welfare, applauded Opara’s approach to her research.
“Venue-based sampling takes considerable work,” Ballan said. “It’s much easier to send a survey to schools.”
Indeed, this kind of effort “takes time, manpower and a tremendous understanding of how [Opara’s] inter-disciplinary focus is intertwined,” Ballan said. “She’s a family studies researcher, a social worker, and a public health researcher. Having those three areas of expertise, it’s not surprising that venue-based sampling was the one she chose.”
Opara is turning to some of the leaders in Paterson to advise her during this effort. She has created a community advisory board that represents youth and includes community leaders.
One of the challenges this year is that some of the sites where these youth might typically congregate may have fewer people during the pandemic. “It’s something we’re really focusing on in our first couple of meetings: where are the youth going?” Opara asked. She suggested sites could include basketball courts and parks. She is also exploring ways to recruit youth (between ages 13 and 21) online.
Opara is hoping to understand how the environment may impact people in the community as either a protective or a risk factor for substance abuse and mental health.
“What are some structures that could be serving as a protective buffer for kids who aren’t engaging in substance abuse and who don’t have negative mental health symptoms?” she asked.
On the other hand, she would like to identify those buildings or features that increase the trauma or risk and that might cause youth to mask their symptoms.
Once she finds these at-risk youths, Opara will ask about drug and alcohol use, lifetime drug use, their feelings about mental health and their levels of anxiety and depression. She also expects to ask about suicidal ideation.
When she understands the challenges and stressors, she hopes to create a culturally relevant, community based and neighborhood focused intervention. For this to work, she plans to recruit some of the people involved in the study to inform these solutions.
Opara is determined to make a difference for the city of Paterson.
“I don’t want to leave the community with nothing,” she said. “I don’t want to come in, collect data and leave. It’s important to create a sustainable change” that will “empower the community and empower youth.”
In Paterson, Opara recognizes the diversity of different neighborhoods, with people from different backgrounds, experiences and languages living in different blocks.
As a research assistant at Montclair, Opara said she encountered resistance at efforts to change neighborhoods, particularly when she was involved in programs to reduce the hours when liquor stores were open. She said youth mobilization, which included speaking about their experiences witnessing alcoholism in their neighborhoods, helped encourage the city council to pass the ordinance.
People came from other neighborhoods, bought alcohol, drank until they passed out and created a “really dangerous environment” as youth and teenagers were afraid to walk home past people who were drunk in the streets.
Opara appreciates the support of educators in the Paterson School District and the mayor, André Sayegh. She said her efforts may be particularly important in this environment, as New Jersey has cut funding from school-based youth services amid a declining budget caused by a slowing economy triggered by the pandemic.
If the program Opara creates works, she hopes other researchers can extend it to other communities.
Noah Strycker once made a bet with a cruise ship full of passengers: if any of them spotted him without binoculars at any point during a 14-day trip, he would buy them all drinks. Even with that incentive, no one won a free drink, in large part because Strycker’s passion for birds means his binoculars are never out of arm’s reach.
A master’s candidate in Heather Lynch’s lab at Stony Brook University, Strycker, who has turned his world travels in search of his feathered friends into books, is working through the second year on Lynch’s specialty: penguins.
As a part of the team, Strycker is contributing to a population analysis of chinstrap penguins. Last year, he ventured to Antarctica with a field team for several months to count colonies of these six-to-ten pound birds.
The “piece de resistance” of that journey was a trip to Elephant Island, which is where, over 100 years earlier, Ernest Shackleton and his crew were marooned for several months before their rescue.
During Strycker’s journey to the famous but uninhabited island, the team counted the number of chinstrap and compared the population to the last known count, which occurred 50 years ago.
They determined that the chinstrap has had a significant decline, in some cases losing more than half its population in some areas. After a survey of Elephant Island and Low Island, the research team suggested that the decline in the chinstrap’s main source of food, krill, likely caused this reduction.
As for this year, Strycker had planned to travel back to Antarctica until the pandemic caused the cancellation of the trip. He is conducting a literature search to find previous chinstrap penguin counts. In the final part of his master’s program, he will help provide an updated assessment for the International Union for the Conservation of Nature.
While the IUCN provides information on threatened or endangered species, Strycker recognizes that the chinstrap won’t likely be on that list. “There are many millions of them,” he explained in a recent interview. “[But] they are declining. We are trying to give the IUCN updated information.”
Lynch’s lab will provide information for IUCN’s green list, which is for species that aren’t endangered. Species on this list might benefit from additional information that could help shape a future conservation strategy.
Strycker, who traveled to 41 countries in 2015 to count as many birds as possible in a year, appreciated and enjoyed his interaction with penguins. These flightless birds have no fear of humans so they waddled up to him and untied his shoelaces. They also fell asleep next to his boot and preened the side of his black wind pants.
Strycker landed in the world of penguins when he was working as a naturalist guide on a cruise ship and met Lynch, whose team was on the same boat.
Lynch was delighted with the chance to add Strycker to her team. “One of the most difficult things about our work is that there is such a steep learning curve for doing Antarctic field research,” Lynch explained in an email. “To grab someone like [Strycker] with so much Antarctic experience under his belt was just fantastic.”
Lynch appreciates how Strycker led the chinstrap survey work, not just in collecting the data but also in analyzing and writing it up. Strycker is “a terrific writer (and very fast, too) and his finesse with writing helped us get our research out for review faster than would normally be possible,” she said.
After seeing and hearing birds around the world, Strycker has an unusual favorite — the turkey vulture. When he was in high school in Eugene, Oregon, Strycker watched a nature documentary with David Attenborough in which the host put rotting meat out in a forest. In no time at all, turkey vultures discovered the feast. “That is the coolest thing I’ve seen,” Strycker recalls thinking.
Months later, he discovered a road kill deer while he was driving. He put the dead animal in the trunk of his ’88 Volvo Sedan and dumped it in his front yard, waiting to see if he could duplicate Attenborough’s feast. Fairly soon, 25 turkey vultures arrived and were sitting on the roof of his house. The neighbors didn’t complain because Strycker grew up on a dead end, 20 acres from the nearest house.
Fortunately for him, his parents didn’t seem too upset, either. “When they realized that their only child had become addicted to birds at a young age, they rolled their eyes and said that there’s much worse things that he could become addicted to,” Strycker recalled.
As for Long Island, Strycker said the area is currently in fall migration season. All the birds that nested in Canada are passing through New York on their way to spend the winter in warmer climates.
The migration patterns typically start with shorebirds in August, transition to warblers in September and to waterfowl, such as ducks and geese, which appear in October and November.
“This fall has also been exciting because several species of northern songbirds have ‘irrupted’ south, so we’re seeing unusually high numbers of them on Long Island,” said Strycker. This month, red-breasted nuthatches, purple finches, and pine siskins have appeared in large numbers, which doesn’t happen every year.
At this time of year, birds sometimes get lost outside their usual range. Last week, a painted redstart, which should be in Arizona, arrived in Floyd Bennett Field in Brooklyn.
“I was out there at dawn the next morning, along with half the birder population of New York, but unfortunately it had already moved on,” said Strycker.
People interested in tracking bird migration by radar can use the website birdcast.info, which can predict bird migration like the weather using radar data. Strycker advises interested birders to type “Stony Brook” into their local Bird Migration Alert tool.
Once he earns his degree, Strycker plans to build on and share his experiences.
He would like to write books, give presentations and “generally inspire the world about birds.”
From left: Carl Safina, Larry Swanson and Malcolm Bowman. Swanson who died Oct. 17, was renowned not only for his work at SBU, but also his kindly demeanor. Photo from Stony Brook University
Stony Brook University’s Robert Lawrence “Larry” Swanson, associate dean of the School of Marine and Atmospheric Sciences, died Saturday at the age of 82, leaving behind a professional legacy that included awards for his stewardship of waterways and numerous personal connections.
Swanson was a chair of the SoMAS Boat Committee for years and loved being with the crew and out on the boat. He was known for his appreciation for snacks, particularly Oreos. Photo by Jason Schweitzer
Swanson, who had planned to retire next summer, was teaching waste management issues remotely this fall.
A fixture at Stony Brook since 1987, he led the Waste Reduction and Management Institute. The 6-foot, 2-inch Swanson, who was interim dean for SoMAS from 2016 to 2018, had joined Carl Safina, endowed research chair for Nature and Humanity and Malcolm Bowman, distinguished service professor SoMAS, on the New York State Ocean Acidification Task Force since 2018.
In an email, Safina described Swanson as a “gentleman” and a “kind and knowledgeable man who was a well-recognized leader.”
In 1979, Swanson came to the rescue for Bowman, his wife Waveney and their young family. The Bowmans had rented their Stony Brook house during the summer and planned to live in the United Kingdom. With their children, the Bowmans decided to return to New York, where they endured mosquitoes and yellowjacket stings while living in a tent.
Swanson offered the Bowmans his house as long as they took care of Swanson’s golden retriever while he and his family traveled.
He met his wife Dana Lamont at a party in Seattle, where the scientist rose to the rank of captain as a commissioned officer at the National Oceanic and Atmospheric Administration.
Swanson used to take long walks in Seattle. After the couple started dating, he told Lamont he must have walked by her house numerous times before they met, which Lamont likened to the song “On the Street Where You Live” from “My Fair Lady.”
Swanson and Lamont have two children, Larry and Michael.
Lamont recalled how Swanson spent considerable time at sea. Lamont said her husband was on a ship once and tried to teach college students reluctant to learn about celestial navigation because they had GPS.
“A week or two later, there was a fire on board, they lost all technology and [Swanson] said, ‘OK, you put the fire out. Now, take us to Hawaii,” Lamont said. They had to use celestial navigation.
Lamont said her late husband was “never afraid of anything, such as flying through the eye of a hurricane.”
Swanson testified in a Supreme Court case in 1985. Lamont said he “loved” the experience.
Described by people who worked with him as kind, caring, steady, reliable and humble, he was considered a role model as well as a leader.
SoMAS adjunct professor, Frank Roethel, recalled how he had major surgery in a Manhattan hospital. One afternoon, he woke to find Swanson in a chair next to his bed.
“I was shocked that he would travel just to spend a few moments with me, but that was him,” Roethel said by email.
Bonnie Stephens, who worked for Swanson for 22 years, appreciated how the man brought people together for lunch, where they discussed politics, shared jokes and offered personal stories.
A dog lover, Swanson also leaves behind their dog Lily, a Chesapeake Bay Retriever, which was his favorite breed of dog.
Born in Baltimore, Swanson spent his childhood primarily in Maryland with his parents Hazel and Lawrence.
A 1960 graduate in civil engineering from Lehigh University in Bethlehem, Pennsylvania, Swanson earned his doctorate in oceanography in 1971 from Oregon State University.
Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases, raised a red flag about the safety of annual family gatherings during Thanksgiving last week on an interview on CBS.
People may have to “bite the bullet and sacrifice that social gathering unless you’re pretty certain that the people that you’re dealing with are not infected,” Fauci told CBS.
Richard Gatteau, SBU Dean of Students. Photo from SBU Website
Doctors at area hospitals and officials at Stony Brook University are offering guidance to residents and students over a month before an annual holiday that often brings people from several generations, cities and states together.
Before they send some of the 4,200 on campus students at SBU home, the university plans to test them for the presence of the virus that causes COVID-19.
The week of Nov. 16, “every resident will be tested,” said Dean of Students Richard Gatteau. “Any positive cases would remain on campus” until the university knew they were negative.
Students remaining on campus would receive meals and would get the same level of care through the holidays that students would normally get if they tested positive during the semester.
Stony Brook expects the student population to decline after Thanksgiving, when all classes and final exams will be remote through the end of the semester.
For the students who plan to return to campus, Stony Brook realizes the logistical challenges of requiring viral tests during the short holiday and will provide tests in the first two days after these students return to their dormitories.
Even before the holiday, Stony Brook expects to increase the frequency of viral testing from bi-weekly to weekly.
Gatteau said the student government plans to educate students who plan to join family during the holiday about procedures to keep everyone safe. This guidance mirrors school policies, such as wearing masks inside when near other family members, keeping a distance of six feet inside and washing hands regularly.
The dean of students recently spoke with Dr. Deborah Birx, head of the White House’s coronavirus task force who visited Stony Brook to speak with officials about the school’s COVID response. Though Birx was pleased with the measures the university took, she was reportedly more worried about the behavior of extended family than with students during Thanksgiving.
“Her concern is with the older generation not following the rules,” Gatteau said. She wanted students to encourage their grandparents to follow the same procedures because “grandparents will listen to their grandkids.”
Types of Tests
Dr. Michael Grosso, Chief Medical Officer at Huntington Hospital, urged everyone to plan to get tested before coming together for Thanksgiving.
Dr. Grosso said two types of tests are available for students and parents. The first is an antigen test and the second is a PCR, for polymerase chain reaction, test. Grosso suggests that the PCR test is more reliable as the antigen test “misses more cases.”
The test technique is critical to its success. Some false negatives may result from inadequate specimen collection, Grosso said. The deep nasopharyngeal specimen “requires a little skill on the part of the person doing the test.”
Additionally, people getting tested before a family gathering need to consider the timing of the test. They may receive a negative test during a period of time in which the virus is developing in their bodies.
Active testing may have helped reduce the severity of the disease for people who contract it. People are coming to the hospital in some cases before the disease causes as much damage.
In addition to getting tested and monitoring possible symptoms, Grosso urged residents to continue to practice the new, healthier etiquette, even when they are with relatives during the holidays.
“Families need to have conversations” about how close they are prepared to get before they see each other, Grosso said. People need to “decide together what rules [they] are going to follow, and make sure everybody is comfortable with those.”
As for Thanksgiving in the Grosso home, the Chief Medical Officer said he and his wife have five children between them, two of whom will be coming for the annual November holiday. The others will participate, as has become the modern reality, at the other end of a zoom call. Typically, the entire family would come together.
Stony Brook’s Gatteau said he and his partner typically have 20 to 25 people over for Thanksgiving. This year, they are limited the guests to seven people. They plan to keep masks on in their house and will crack a window open so there is air flow.
Stony Brook University baseball player Nick Grande slides into third. Photo from SBU Athletics
Stony Brook Athletics launched its latest fundraising campaign asking people to “Believe in the Seawolves” as the university sports program faces an uncertain future.
SBU Athletic Director Shawn Heilbron accepts the 2019 Commissioner’s Cup from America East Commisioner Amy Huchthausen. Photo from SBU
On Thursday, Oct. 8, the university’s Giving Day, Director of Athletics Shawn Heilbron held a virtual town hall through Facebook Live to answer questions surrounding the status of Stony Brook Athletics for this school year and for the future.
“Let’s have the Stony Brook Athletics story of 2020-2021 be the greatest story in our history,” Heilbron said during the town hall. “I think we’re going to do that.”
One of the major concerns, he said, was the financial standing of the university since revenue dropped throughout the COVID-19 crisis, calling it a “dramatic financial impact.”
He mentioned that the program lost nearly $700,000 from basketball, alone, and when the school closed in March, students were reimbursed their student fees which neared a $2 million loss.
“Ticket sales, donations, corporate partnerships … you could imagine the impact there,” he said. “The trickle down comes from the state to the school to us, and many universities across the country are dealing with it.”
He said it was close to $5 million in revenues lost.
“We’ve made some tough decisions, many staff positions are being left unfilled,” he said. “We’re very concerned about our future … schools across the country are cutting sports, these are difficult decisions that are hard to come back.”
The new fundraising campaign coined “Believe In the Seawolves” comes from asking people to do just that. “Believe in our value and commitment to this university,” Heilbron said. “If we can get people to get behind that we can come out of this stronger … It’s more than a campaign, I want it to be a movement.”
But just because COVID-19 guidelines aren’t allowing sports to be played as of right now, Heilbron they are not cancelled, just postponed. He added that fall sports were moved to the spring, which will make for a very active season.
“It’s going to be quite an active period for us,” he said. “We’re just starting to look at what those schedules will look like and will be announced very soon.”
He said that utilizing this time now will be a springboard for next fall, and are keeping safe in doing so.
The athletes who are participating in practices now, like basketball, have a regimented screening process before hitting the court.
“Student athletes come through one entrance, have their temperature checked and then they get a wrist band,” Heilbron said. “They can’t come in if they don’t have the wristband.”
Although it is an uncertain time for the student athletes who worked to play at Stony Brook University, Heilbron said the first day of fall semester was a good one.
“It literally was an energetic lift in our department that they needed,” he said. “It was good to have the family back together.”
The university announced after Thursday’s Giving Day campaign, more than 240 donors combined to contribute gifts exceeding $200,000 to go towards athletics. The campaign will continue to fundraise throughout the remainder of the year.
The Port Jefferson Station/Terryville Chamber of Commerce train car will be the site of the Council District 1 Drug takeback event Oct. 24. File photo by Kyle Barr
It’s time to turn in those unused and expired prescription medications sitting in the bathroom cabinet.
The Town of Brookhaven Council 1 Drug Prevention Coalition and the Center for Prevention and Outreach’s SB IMPACT Coalition through Stony Brook University’s Student Health, Wellness and Prevention Services will be hosting a Drive-Thru Wellness Day to support a healthy, drug-free community during Red Ribbon Week.
On Saturday, Oct. 24 from 10 a.m. until 2 p.m., visitors can turn in their old prescriptions for safe disposal and celebrate National Prescription Drug Take Back Day.
The event will be held at the Port Jefferson/Terryville Chamber Train Car, located at the southeast corner of route 112 and 347. Cars enter on Rose Ave.
Free masks and hand sanitizer will be given out, and a food drive will be collecting to benefit local food pantries.
Elizabeth, Evie, Madelynn and Kevin Kennedy preparing at their home for Thursday night’s virtual Wave of Light to remember their lost daughter and sister, Grace Ann. Photo byJulianne Mosher
Elizabeth Kennedy lost her second child when she was 26 weeks and six days pregnant.
On Feb. 25, 2018, she heard the words from her doctor that no mother wants to hear, that their unborn child Grace Ann’s heartbeat could not be heard. Struck with grief, Kennedy, a Rocky Point resident, felt she needed to find an outlet to help her cope with her loss, so she began researching different infant loss support groups. Through her online search, she found the Star Legacy Foundation.
“I’ve gotten in touch with other women and families who have lost babies and it’s been such a relief to know that I’m not in this alone,” Kennedy said. “It has made me want to let other people know that they are not alone, either.”
When she found the strength through the organization, she knew she had to give back and help other women who have gone through the same thing.
“It has made me want to let other people know that they are not alone, either.”
— Elizabeth Kennedy
Last year, through the nonprofit, Kennedy took the initiative to try and make Oct. 15 a county-wide Pregnancy and Infant Loss Remembrance Awareness Day. The month of October was proclaimed as “Pregnancy and Infant Loss Awareness Month” by President Ronald Reagan in 1988.
Earlier this year, she met with Legislator Sarah Anker (D-Mount Sinai), who sponsored the resolution. The legislator said Kennedy’s story moved her in a personal way.
“Many other families in our county have experienced this kind of tremendous loss,” Anker said. “I hope that designating this day will help provide necessary support to those who are grieving and remind them they are not alone.”
The resolution was approved unanimously by the Suffolk County Legislature Oct. 6. Anker said the day will increase awareness of the causes and impacts surrounding pregnancy and infant loss. It is also a means to improve understanding as well as offer support and potential resources for those who grieve the loss of a pregnancy or infant.
According to the Star Legacy Foundation, thousands of families in the United States experience pregnancy and infant loss each year. In the U.S. there are approximately 24,000 stillbirths, or one in 160 births a year. In addition to stillbirths, current research suggests that between 10% and 20% of medically confirmed pregnancies end in miscarriage, according to the U.S. Centers for Disease Control.
“It’s not just the experience that’s traumatizing for families,” Anker said. “It’s everything after, too.”
Kennedy is also using her new platform to establish a support group collaboratively with Stony Brook University Hospital.
“I want to put as much information out there as possible so when people go through this, they don’t just crawl into a ball and feel that they’re by themselves,” she said. “To be able to talk to these people and have somebody who understands what you went through, to cry with them, remember our babies with them — it just needs to be out there more … it needs to be talked about. We need to change the stigma.”
On Thursday night, Anker joined people across the country and hosted a virtual “Wave of Light” on Facebook Live and through Zoom. With Kennedy’s family online, and several other local families who experienced such a loss, they lit a candle in honor of the children who are not here today.
During the candle lighting ceremony, Kevin Kennedy, Elizabeth’s husband, spoke on behalf of his wife.
“We’re all grieving the loss of a baby or a friend’s baby,” he said. “Every one of these candles has a name attached to it … a life’s flame blown out too soon, and it’s our responsibility as survivors to honor and remember them all.”
Although getting over her loss is not easy, Kennedy said she finds comfort in knowing maybe this happened for a reason — that losing Grace will help get the message out to families to know they are never going to be alone.
“I hope people catch on to this now and realize we’re not hiding anymore,” she said. “We’re not going to hide our babies; we’re going to be okay.”
Residents on Long Island and elsewhere can’t call their doctor’s offices and ask to receive all of the same treatment that sent President Donald Trump (R) from the Walter Reed National Military Medical Center back to the White House and the campaign trail.
Dr. Luis Marcos said SBU was planning to participate in the second Regeneron trial, but a general lack of COVID patients scrapped that idea. Photo from SBU
After officials said he tested positive for COVID-19 Oct. 2, the president received a combination of the antiviral drug Remdesivir, an antibody cocktail from Regeneron, and the steroid dexamethasone.
Remdesivir has become more widely used in hospitals on Long Island.
The last two months, “all patients admitted to the hospital may qualify for Remdesivir according to the clinical judgment of your doctor,” said Dr. Luis Marcos, Associate Professor of Clinical Medicine at Renaissance School of Medicine at Stony Brook University.
The patient population that is most likely to benefit from Remdesivir includes residents who are over 60, have diabetes with hypertension and have been admitted to the hospital with mild pneumonia.
Patients who have liver disease or kidney failure may not be prescribed the intravenous drug.
Typically, Remdesivir, like other antiviral drugs, benefits patients who have contracted COVID-19 within a week, because the medicine stops the replication of the virus.
Patients who received Remdesivir after an infection that lasted more than 10 days may not benefit as much because the drug won’t reverse damage done to the lungs.
The side effects of antivirals typically last one to two days.
Dexamethasone is also available and used in hospitals including Huntington Hospitals and Stony Brook.
As a steroid, dexamethasone has “multiple side effects,” said Dr. Michael Grosso, Chief Medical Officer at Huntington Hospital. “It is only given when the benefit is expected to significantly outweigh the risk and so there’s going to be that assessment in every case,” Dr. Grosso said.
Patients with diabetes are likely to experience “more trouble with their blood sugar control if they’re receiving dexamethasone,” Grosso added.
Dexamethasone can also produce sleeplessness and, in some cases, psychiatric disturbances, doctors added.
The monoclonal antibody cocktail from Regeneron the president received has had limited use, mostly through clinical trials and in compassionate care cases. It has not received approval from the Food and Drug Administration, although it has applied for emergency use authorization.
Stony Brook was planning to participate in the second trial of Regeneron, with Dr. Bettina Fries, Chief of the Division of Infectious Diseases, as the principal investigator and Dr. Marcos as the co-principal investigator. The hospital did not participate because it didn’t have enough cases.
Marcos said the cocktail of antibodies block the virus actively causing inflammation.
The good news with the Regeneron treatment is that the side effects appear minimal, Marcos said.
Regeneron is unlikely to reverse the damage in the lungs caused by the virus. In managing patient care, doctors try to slow or stop the progression of pneumonia from the virus.
Marcos said patients who are asymptomatic or have minor symptoms shouldn’t race to take the more widely available Remdesivir or Dexamethasone because 99% of patients with COVID infection do not have pneumonia. Those patients with a mild upper respiratory infection may not need anything but Tylenol.
Patients who are developing more severe symptoms can come to the hospital to determine the best medical response.
“If you have fever or you don’t feel that great, of course, come to the Emergency Room, we can evaluate you, and decide what to do next. For mild, mild cases, I don’t think we should be using Remdesivir,” Grosso said.
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.”
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