A FORMIDABLE PRESENCE
‘Mute Swans at West Meadow Creek’ by Patricia Paladines is on view at Emma S. Clark Memorial Library in Setauket through Nov. 30. The photograph is part of the library’s current exhibit titled Long Island Wilderness Through the Lenses of the Four Harbors Audubon Society by FHAS board members.
By Leah Chiappino
After a house fire this summer, one Stony Brook family learned a valuable lesson.
“People come first, things a distant second,” Dave Seyfert said.
He and his wife Sherri are two of the founders of the APS Type 1 Foundation, which aims to make physicians more aware of the rare disorder. APS type 1 is a rare autoimmune disease that affects one in two million people in the United States.
The couple arrived home one day to the house fire shortly after the foundation’s third symposium in National Harbor, Maryland, in July. The family is currently renting a house and is hoping to return to their own home in a few months.
The Seyferts said that their spirits were not diminished by the tragedy, in which everyone, including the family dog, was safe, because they are pleased with the research and outcome of the symposium. When discussing how well they were coping, Dave Seyfert said, “APS puts things in perspective. When you have a child that’s sick your whole world stops. Nothing else is important — it doesn’t matter what you look like or if you’ve slept.”
He added in a follow-up email, “Sherri and I also share a deep faith in God which again helps put things in perspective.”
As reported by TBR News Media in 2017, the Seyferts’ son, Matthew, was diagnosed with autoimmune polyglandular syndrome type 1, known as APS-1, in 2006. The condition causes vitamin D, which provides calcium to the bones and muscles, to have a difficult time metabolizing. While symptoms can include bone mass problems, cramping and an irregular heartbeat, all patients are plagued with Addison’s disease, hyperthyroidism and candidiasis.
According to Dave Seyfert, APS-1 is unique among other genetic disorders because there is only one gene mutation, so researchers think there is a link to discovering cures for other autoimmune diseases, such as diabetes.
The symposiums are meant to be a haven for APS-1 research, as well as a meetup for families and patients to build a community of support.
“There are a lot of families going through a rare diagnosis, and you feel like you are all by yourself,” Dave Seyfert said. “We want to share with other families that it’s amazing what we achieved [in terms of research] by working together.”
“We want to keep going until we find every APS patient.”
— Sherri Seyfert
The foundation, whose mission involves research, education and raising awareness, became a 501(c)(3) in 2014. That was eight years since the Seyferts had started hosting basket raffles. Also, Todd and Heather Talarico of New Jersey, the former being the current foundation president, organized their first golf outing in 2006 that raised approximately $35,000 for the National Organization for Rare Disorders, known as NORD, which was used to grant research. According to Sherri Seyfert the foundation recently funded its seventh research grant for $100,000 through NORD, which takes the organization’s grant funding to more than $500,000.
Two board members, Robin Finch and Jennifer Orange, both of whom have a child with APS-1, joined in 2016, after the foundation held its first symposium, which was located in Toronto in 2015.
“Researchers from all over the world came and spoke on APS type 1,” Sherri Seyfert said. “It was the first time this community of patients and families were able to come together and met each other.”
A second symposium in 2017 was hosted personally by the Seyferts at Stony Brook University.
The board has grown to its current six members and, in addition, they have quarterly conference calls with physicians from all over the world so they can collaborate.
Dave Seyfert said he is pleased with the outreach of the foundation. He said Todd Talarico was on the TV show “Mystery Diagnosis,” and a grandmother watching realized her granddaughter suffered from the disease. An American serviceman stationed in Italy was in the hospital with his son and, upon doing research, came across the foundation’s website and realized his son had APS-1. Patients at Stony Brook Children’s Hospital were diagnosed upon a doctor reading a research article on APS-1 written by physicians all over the world, who connected at past symposiums and were published in The New England Journal of Medicine. The article was funded by the foundation.
Furthermore, NORD has granted the foundation funding for a comprehensive study of APS-1, logging patients and their symptoms. While 95 percent of the condition is treatable, experts estimate that a thousand patients are living
undiagnosed.
“We want to keep going until we find every APS patient,” Sherri Seyfert said. “People pass away from not knowing, and so many struggle with so many health issues and organ damages for years because they are not diagnosed quickly enough.”
Finch, a California-based attorney who was assisted by Todd Talarico in getting her daughter diagnosed, is the foundation’s recording secretary and feels as though she owes a lot to the Seyferts.
“The passion and the time and energy they gave to the symposium at Stony Brook was just invaluable,” Finch said. “They’re both just the kind people who try so much to make Matthew and other kids’ lives better. Dave, in particular, feels so deeply about things, and his commitment to my family and the disease’s community is so incredible. They’re the heart and soul of this group.”
Orange, the foundation’s vice president, added praise for the Seyferts.
“The Seyferts are community builders and have a great way of bringing people together and getting people to realize what a community can do,” she said.
What started as an interest in wine has led to a store that has become a staple in the Three Village area.
On Nov. 30, Rich Mora will celebrate 30 years as owner of Mora’s Fine Wine & Spirits. His wife of 16 years Carolyn, a retired children’s librarian who helps her husband run the store, credits its success to Mora’s passion for locating smaller production wines and different spirits customers tell him about. She said patrons, many of whom find the store through its website, come from all over including a gentleman recently all the way from Tennessee.
“We have great customers, but basically it’s Rich’s passion for fine wine and for staying his course and not selling out to big companies,” she said. “I’m very proud of him. Thirty years is a big thing. It’s all about community here.”
Mora’s Fine Wine & Spirits continues the legacy of a liquor store at the location of 280 Route 25A in East Setauket. Mora said in 1989 he bought the building from Robert Eikov, who was in his 80s at the time and also ran a liquor store. The Eikov family lived in the area for decades, and elder Eikov originally opened a cut-to-order butcher shop at the location. Three Village Historical Society historian Beverly Tyler said Eikov, along with his wife Blanche, constructed the building shortly after they were married sometime in the 1930s, and lived in an apartment at the rear of the store. Decades later, Eikov reopened his business as a liquor store.
“Robert Eikov told me that he was having trouble cutting meat due to the cold temperature and because his hands were not as flexible as in his youth, so he had to give up the butcher shop,” Tyler said.
Today the building looks pretty much the same as it did when Eikov owned it, Mora said, even including a green awning and a neon liquor sign that has been there since 1965.
The store owner said he didn’t set out thinking he would own a wine store, even though he always felt like he would work for himself. Born in Central America, he grew up in Larchmont in Westchester County, and after going to college for a while in Oregon he decided to study at Stony Brook University. He holds an undergraduate degree in physics, but while studying at SBU, he decided to take a formal wine class and became interested in the art of fine wines. He started teaching after college but the wine tasting classes stuck with him, and he began researching how to acquire a liquor license and setting up the business itself before he bought the building he is in today.
While he was studying at SBU, Mora said the area reminded him a lot of Larchmont, where he lived near the Long Island Sound. He added he always loved the water, beaches and boating.
“It felt a lot like home here,” he said.
When it comes to running a successful business, Mora said a store owner needs to constantly reinvent the business as rules, shipping laws and the business world are constantly changing.
Through the years, Mora has offered events, such as tastings, for his customers as he said the universe of wine keeps expanding, and with the increased number of spirits brands out there, interest has grown.
“This community is very responsive to that,” he said. “They like to discover exciting new wines. They like our events. They like the people from the wine business that we introduce them to.”
To celebrate the store’s milestone, the Moras recently had a bourbon whiskey specially made by Garrison Brothers Distillery in Texas. The couple tasted samples to choose what they felt best represented the store. Rich Mora described it as “a honey barrel,” and bottles are available at the shop for purchase for a limited time.
The season may be over for the Patriots boys varsity soccer team, but they have a lot to be proud of this fall.
On Oct. 29 Ward Melville, the No. 15 seed, made it to the first round of the playoffs where the Patriots took on Commack, the No. 2 seed. This year marked the second year in a row that the boys soccer team made it to the playoffs. The Patriots lost the game, 3-1, against the eventual losing finalists. Ward Melville ended the season in third place in League I at 6-4-2 and 6-7-2 overall.
Despite the Suffolk AA playoff elimination, the team had some high points this season.
Senior Christian Bell, a co-captain who played defense, said a highlight of the year was when the Patriots were on the road playing against Patchogue-Medford on their rival’s senior night. Ward Melville scored a winning goal to make it 2-1 with under two minutes remaining. Another memorable event for Bell was during the playoff game against Commack when they tied 1-1. He listed senior midfielder Sean McNight and sophomore forward Sean LaPeters as standout players.
“McNight did all the right things and was one of the hardest working players on the field,” Bell said. “Sean LaPeters is two years younger so he’s a sophomore, being not as big and as old as the other guys, but he really stepped up big this year for us.”
Giancarlo Serratore, another of the team’s co-captains who was a wide midfielder, also named Sean McNight as one of the top players. Midseason, McNight joined his fellow seniors as one of the team captains.
“He was really consistent at every
game,” Serratore said. “He went out there and played well.”
For Serratore, the highlight of the past soccer season was a win at home, 4-3, against William Floyd Oct. 16. He said the Patriots needed a couple of wins to get to the playoffs at that point, and they had lost to the school earlier in the season. He said the team enjoyed the win especially since their rivals had a big celebration after they beat the Patriots just weeks earlier.
Both Bell and Serratore said they admired Ben Perez for playing this season despite a hip injury. Serratore said the senior defense member showed a lot of courage for his teammates by playing through the pain.
Serratore said his team worked well together during the season full of ups and downs.
“I thought the team persevered well throughout the year so I’m proud of the boys,” he said.
Linda Ward, whose son Zack plays defensive, said she has been watching the games for the last two years, and the team’s defensive line, which includes her son, Perez, Bell and Jason Flynn, deserves a shout-out due to their calm temperaments and skills at tracking the ball and anticipating the play.
“They held the line and kept almost every game within one goal,” she said. “They played like a well-oiled machine.”
Both Bell and Serratore said they will miss playing with their team members when they graduate from Ward Melville in June after playing with them for years.
“It was such a great team, and I couldn’t ask for a better team,” Bell said.
By Leah S. Dunaief
Continuing our sailboat-and-diesel cruise down the Dalmatian Coast on the Adriatic, we next stopped in Split, the second largest city in Croatia. Again, located against the backdrop of steep limestone mountains, Split is particularly known for its beaches and Diocletian’s Palace.
Built for the Roman emperor, Diocletian, at the turn of the fourth century, and built like a Roman military fortress, the palace was at one time the home of thousands of inhabitants and its 200 buildings are surrounded by white stone walls. Today, the palace is a sprawling Romanesque destination spot for tourists, and it also offers bistros, hotels, shops and a cathedral, some of which are underground.
The city, like the rest of Croatia, was variously part of several empires throughout the centuries, including that of Austria-Hungary and Venice. Its importance, because of its coastal location and proximity to both Europe and the East, was as a trading center. Now it is a picturesque stop on the Dalmatian Coast.
With the mountains along the shore getter ever steeper, we cruised on to Dubrovnik on the southern coast of Croatia. The Old Town is surrounded by massive walls, extended until the 17th century, and features fabulous examples of Baroque, Renaissance and Gothic architecture. Paved with limestone and lined with shops and restaurants, the city is built along the shore and up the sides of the mountains, a natural magnet for photographers. There is even a cable car to ascend the undeveloped upper mountainsides. We rode back down in one such car at sunset, marveling at the beauty of the city as the lights came on below us in the houses and shops, and on the many boats in the distant harbor.
Dubrovnik is particularly known for its wealth and its diplomacy. The first was much the result of the second. During the many centuries of warfare and strife among the surrounding empires, the rulers of Dubrovnik, established along the doge and city council pattern of Venice, were able to avoid invasion. They paid tribute to the sultan of the Ottoman Empire and to others throughout the years by using the wealth they accumulated from their favorable trading position along the coast and from the sale of their precious natural resource: salt.
Further evidence of their diplomatic skill extends even to the American Revolution. They were able to provide ships that carried pelts from Baltimore, Philadelphia and New York to Marseilles, France, because they had gained the status of safe passage from the colonists and were not fired upon during hostilities.
Slave trading was abolished in Dubrovnik, then part of the Republic of Ragusa, as early as 1418. The city, along with its neighbor to the north, Split, is on the UNESCO World Heritage Site List. And although Dubrovnik was heavily shelled in the early 1990s from Bosnia-Herzegovina, the city has been carefully rebuilt to authentically reflect its medieval and renaissance history and architecture. Visitors can see where the lower old stones of buildings remain and where the newer, careful reconstruction has replaced the demolished tops and roofs. Dubrovnik is the pearl of the Adriatic and the city that attracts the most visitors to Croatia.
Last along the coast is Montenegro, named by the Italian sailors as “black mountain” for the steepness and hence frequent cloud cover that blocked out the sun above the mountainsides. Montenegro is a republic and offers tourists some of the most rugged terrain in Europe. There is much wild greenery and most of the areas have only one lane roads. We visited an olive oil farm while there, enjoying sight of the ancient methods of making olive oil compared now with computerized processes.
On the way, we stopped to overlook the Bay of Kotor, a strategically important site of great natural beauty. Though not a member of the European Union yet, it is the government’s goal to join by 2025. Nonetheless the country uses euros and looks to develop into an elite tourist destination. At this time, its economy is dependent on direct foreign investment, and the Chinese and Arabs are competing there for developmental control.
Next: Back to the Italian Coast.
Veterans Day events across Long Island have inspired children to sing, bands to play, politicians to speak and servicemen to march in parades.
Many Long Islanders came out to exhibit unwavering support for veterans on this national holiday. But with so many veterans facing hardships, such as food insecurities, joblessness, homelessness and health issues — some service-related — more needs to be done each and every day.
There are many ways our readers can help the men and women of the armed forces long after Veterans Day is over. Long Island organizations are always looking for help, year-round, whether it’s donating time, money, clothing or gently used items.
Here are a few groups, where you might lend a hand:
• Long Island Cares Inc. — The Harry Chapin Food Bank: This Hauppauge-based center has been helping veterans, military personnel and their families since 2010. According to the nonprofit, more than 1,200 veterans per month typically receive support from its regional food bank through many of their programs. Long Island Cares will provide 500 veterans with holiday meals this year. The food bank is able to do this in part thanks to an $11,000 donation expected from Steven Castleton, civilian aide to the Secretary of the Army. Long Island Cares also offers the Veterans Mobile Outreach Unit, the VetsWork program and Military Appreciation Tuesdays where all Long Islanders can help by donating food items or money.
• United Veterans Beacon House: Headquartered in Bay Shore, this organization provides housing throughout Long Island for veterans. According to its website, on any given day more than 255 men, women and children throughout the tristate area have received services ranging from help with homelessness to treating PTSD, addiction and more. The organization can always use coats, gently used clothing and furniture.
• Long Island State Veterans Home at Stony Brook University: Located on SBU’s west campus, interested people can help out by assisting the home’s residents during their recreation programs and trips, or simply by sitting and talking with the men and women.
• Northport VA Medical Center: The VA presents opportunities where community members can volunteer or donate their time or money. A cash donation can be used by the VA to buy items for patients including hygiene products and refreshment supplies. The hospital also collects items such as magazines, coffee, and new or gently used clothing.
Some veterans are doing well, but sometimes they could use a little company. Many people at the senior centers and retirement homes would welcome a visit, so they can share a story, or have someone even record it for future generations.
Long Island has the highest concentration of vets in New York state. These men and women are our neighbors. Make some time to find a vet in your community.
By Daniel Dunaief
You know the face dogs make when they’re taking care of their business? I’m not talking about number one. I’m talking about the big whopper: number two. For many dogs, I imagine that is the equivalent of the human concentration face, as we ponder everything from what we should have for dinner, to the best route home in a traffic jam, to the best use of our time on a Friday night when we’re exhausted but know we could contribute to our area through community service.
My dog must know that I’m watching him closely because every time he finds exactly the right spot to release the contents of his bowels, he turns his back to me. Before he enters his squatting position, he looks back over his shoulder to make sure no one or everyone is watching him. He’s easily distracted in the moment of separation from his solid waste.
I respect his wishes and give him his moment of privacy once he starts the process. Now, of course, much as we might watch them as they relieve themselves, I know that they watch us closely, wondering why we’re so meticulous, or not, as the case may be, about scooping up everything they’ve dropped.
My dog still seems to think that he’s doing sufficient cleanup duties by kicking a few blades of grass in the general direction of his creation. He starts tugging on the leash immediately after that, sending a nonverbal signal from his neck to my hand, as if to say, “I got this one, let’s move to that flower bed where Marshmallow left me a secret scented note.”
As I bent down recently to clean up his mess, he saw one of his favorite couples. That’s not exactly a fair characterization, as almost any combination of two people would immediately rank among his favorites if one or both of them came over to him and rubbed his stomach while he turned over on his back and dangled his paws in the air, as if he were at a canine nail salon. The challenge for me, as he was pulling, tugging and twisting on the leash, was to do the impossible: Chat with his human friends, keep him from knocking one or both of them over with his enthusiasm and politely scoop up his poop.
I waited for a moment to retrieve my retriever’s droppings, hoping that he’d calm down enough to allow me to bend my knees and lift the boulders from the ground. No such luck, as he seemed to be playing twist-the-leash-around-the-human-legs game.
One of the many sensory problems with my dog’s poop is that the longer it remains in place, the more it seems to spread out and sink into the ground. Knowing this, I was eager to bag it and to move on during our walk.
Just as the couple finally disengaged from my dog and his leash, another dog and his owner appeared, causing my dog’s tail to wag so violently that it looked like those whirling propellers on an old airplane. While my dog darted and retreated from his much bigger and more mellow friend, I got farther away from his droppings. In the back of my mind, I wondered whether I could, just this once, leave his biodegradable droppings where they landed.
When the other dog and his owner took off, my dog and I returned to the expanding pile. I’m convinced that my dog watched the entire pickup routine with rapt fascination, knowing he’d succeeded in extending the process into something considerably more challenging for the human scrunching his nose at the other end of the leash.
Veterans of Foreign Wars Post 3054 hosted its annual Veterans Day ceremony at Setauket Veterans Memorial Park Nov. 11.
State Assemblyman Steve Englebright (D-Setauket) and Suffolk County Legislator Kara Hahn (D-Setauket) joined veterans and residents to honor those who have served in the armed forces.
The ceremony kicked off at 11:11 a.m. and featured speeches from post Cmdr. Jay Veronko, Englebright and Hahn. The speeches were followed by a laying of wreaths at the memorial monument on the grounds.
Veronko spoke about how the day was originally called Armistice Day, and only honored those who fought in World War I. It was in 1954, after World War II and the Korean War, that Nov. 11 was renamed Veterans Day to recognize all who served.
“Those men and women were ordinary people until they heard the call of duty and answered it and left their families, their homes and their lives, not for recognition or fame or honor that we bestow on them today, but they left to fight to protect the freedoms of our country and maintain our way of life,” Veronko said.
At the end of the ceremony, post member Michael Russell, one of the trustees of the Rommel Wilson Memorial Fund, announced that the fund donated $30,000 to the post for the ongoing renovations of its building. The donation was given in honor of the Rev. Canon Paul Wancura, a former rector of Caroline Church of Brookhaven who died of injuries sustained during a Shelter Island home invasion in 2018.
Close to 100 veterans were on hand for a Veterans Day tribute at the Long Island State Veterans Home at Stony Brook University Nov. 8.
Highlights of the tribute included a performance from New Lane Elementary School students who sang a number of patriotic songs for the veterans and performed the Armed Forces Medley dedicated to the five individual armed services.
Fred Sganga, executive director for the LISVH, spoke on the importance of veterans’ sacrifices.
“Today we honor more than 56 million Americans who proudly wore the uniform on behalf of a grateful nation,” he said. “We all know the burdens of young men and women that they bear in America’s fight against terrorism and tyranny.”
Thomas DiNapoli, New York State comptroller and keynote speaker for the ceremony, said the holiday is a reminder of the strength that comes when people join together in a just cause.
“Every day should be a day to thank our veterans,” he said. “So much of what we now take for granted in our nation was guaranteed by each of you. And the sacrifices of countless men and women who helped preserve democracy and freedom in America and around the globe.”
Since opening in October 1991, the LISVH has provided care to more than 10,000 veterans.
By Daniel Dunaief
Over the course of decades, aging skin tends to wrinkle, revealing laugh or frown lines built up through a lifetime of laughter, tears and everything in between. Similarly, when people age, the proteins in their bodies don’t fold up as neatly. Free radicals cause these misfolded proteins, which are then susceptible to further damage.
The cumulative effect of these misfolded proteins, which is a part of natural cell aging, can contribute to cell death and, ultimately, the death of an individual.
Researchers have typically focused on the way one or two proteins unfold as damage increases from oxygen that has an uneven number of electrons.
Ken Dill, a distinguished professor and director of the Laufer Center for Physical and Quantitative Biology at Stony Brook University, and colleagues including Adam de Graff, a former postdoctoral researcher in Dill’s lab who is currently a senior scientist at Methuselah Health based in Cambridge, England, and Mantu Santra, a postdoctoral researcher in Dill’s lab, recently published research that explored the global effects of unfolding on the proteome. Their model represents average proteins, not individual proteins, detail by detail.
Researchers use the roundworm as a model of human aging because of the similarity of the main processes. The worm model presents opportunities to explore the cumulative effect on proteins because of its shorter life span. Worms in normal conditions typically live about 20 days. Worms, however, that are subjected to higher temperatures or that live in the presence of free radicals can survive for only a few hours.
The shorter life span correlates with the imbalance between the rate at which cells create new proteins and the collapse of misfolded proteins damaged by free radicals, the scientists explained in a paper published online recently in the journal Proceedings of the National Academy of Sciences.
While numerous processes occur during aging, including changes in DNA, lipids and energy processes, Dill explained that organisms, from worms, to flies, to mice to humans experience increasing oxidative damage over the course of their lives.
“The evidence made us think about proteome collapse as a dominant process,” Dill said.
De Graff explained that the paper uses the premise that “certain conformations of a protein are much more susceptible to oxidative damage than others. If you’re folded, you’re pretty safe.”
In the past, researchers have considered linking the way protein misfolding leads to cell death to a potential approach to cancer. If, for example, scientists could subject specific cancer cells to oxidative damage and to develop an accumulation of misfolded proteins, they could selectively kill those cells.
A few years ago, researchers explored the possibility of developing a therapeutic strategy that tapped into the mechanism of cell death. To survive with an accumulation of mutated proteins, cancer cells have increased the levels of chaperone concentrations because they need to handle numerous mutated, incorrectly folded proteins.
A drug called 17-AAG aimed to reduce the chaperones. It worked for some cancers but not others and had side effects. New efforts are continuing in this area, Dill said.
Other researchers, including De Graff, are looking at ways to improve protein folding and, potentially, provide therapeutic benefits for people as they age.
At Methuselah Health De Graff and his colleagues are leveraging the fact that certain conformations are more susceptible to damage and thus the creation of altered “proteoforms.” Identifying these proteoforms could be key to the early detection of disease and the development of preventative treatments, De Graff explained.
Methuselah Health is not interested in treating the downstream symptoms of disease but, rather, its upstream causes.
Going forward, Dill hopes other experimental scientists continue to generate data that enables a closer look at the link between oxidative damage, protein misfolding and cell death.
Some people in the aging field look at individual proteins, he explained. In neurodegenerative diseases, such as Alzheimer’s and Parkinson’s, which are associated and correlated with protein misfolding, scientists are taking numerous approaches. So far, however, researchers haven’t found a successful approach to tackle aging or diseases by altering misfolded proteins.
Dill hopes people will come to appreciate a role for modeling in understanding such varied cellwide processes such as aging. “How do we convey to people who are used to thinking about detailed biochemistry why modeling matters at all?” he asked. “We have our work cut out for us to communicate what we think matters and a way forward in terms of drug discovery.”
Theoretically, some proteins that are at a high enough concentration might be more important in the aging and cell death process than others, Dill said. “If you could reduce their concentration, you might pull the cell back from the tipping point for other proteins,” he said, but researchers know too little about if or how they should do this. He credits De Graff and Santra with doing considerable work to bring this study together.
A resident of Port Jefferson with his wife, Jolanda Schreurs, Dill is pleased that their house has solar panels.
The couple’s son Tyler is married and has purchased a house in San Diego. Despite professing a lack of interest in biology at an early age, Tyler is working as a staff development engineer for Illumina, a company that makes DNA sequencing machines.
The couple’s younger son Ryan is earning his doctorate as a physical chemist at the University of Colorado in Boulder. He works with lasers, solar energy and quantum entanglements.
As for the most recent research, Dill suggested that it is “premised on the importance of oxidative damage, including by free radicals, which is now well established,” he explained in an email. “It then seeks to explain their effects on how proteins fold and misfold.”
De Graff added that the model in the PNAS paper attempts to “understand the consequences of slowed protein synthesis and turnover” that occurs during aging.
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