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Daniel Dunaief

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Angie Tempio with her boyfriend James O'Brien

By Daniel Dunaief

New York may have started Phase One of its reopening and other states may have reopened shops and businesses, but life won’t change much for Angie Tempio.

A native of Commack who had been working at the front desk at Funt Orthodontics in Setauket since 2017, Tempio received a heart transplant last summer and plans to do everything she can to protect herself amid threats from the pandemic.

Tempio, who was preparing to rebuild her life outside of an apartment she shares in Yaphank with her boyfriend James O’Brien, plans to remain as isolated as possible, lowering the chance of contracting COVID-19.

Angie Tempio with her boyfriend James O’Brien

 

“The world is opening back up,” Tempio said. “For me, it’s not. Nothing will change for a few months. I’m used to being left behind.”

Tempio, however, doesn’t feel sorry for herself or rue her situation. She now focuses on new possibilities. 

Diagnosed with restrictive cardiomyopathy when she was 11, she slowly went into heart failure. She struggled for a few years before her transplant, but the last year was the toughest. She said her pacemaker kept her alive.

Tempio, who recently turned 26, had made her peace with death, particularly when she struggled to walk two steps at a time and when her failing heart beat only 30 times per minute. “I was lucky,” she said. Two months after she went on the transplant list, she “got the call, which is a miracle in itself.”

While Tempio feels overwhelmingly blessed that she can consider having children, she said she is also sensitive to the over 1,870 residents who died from COVID-19 in Suffolk County.

Tempio had a rare heart condition that caused her to be a small statistic. Even with the overall mortality rate for COVID-19 below one percent, she empathizes with people and their family who are on the other side of those small numbers.

“Experiencing being a small statistic has definitely made me look at things differently,” she said. “In my head, anyone can [be such a statistic] and most people aren’t realizing that and that’s what’s making me overly cautious.”

Tempio said she was a gymnast and was seemingly healthy before she developed the rare heart disease.

“Although I haven’t experienced the virus itself, I’ve been through the same obstacles,” she explained in an email.

Even when the coronavirus first started infecting people on Long Island, Tempio wore masks to the classes she is taking at Suffolk County Community College, where she hopes to study to become a transplant coordinator. She said she felt judgment from people who thought she was being overly concerned about the virus.

“Most people didn’t realize” how much more vulnerable she was to the virus than the typical person walking around Long Island, she said. 

While she’s waiting for the moment when she can emerge from a home cocoon, Tempio has been connecting with a network of friends and a close-knit heart transplant support group. She and 13 others are a part of a group that shares a profound and unique experience that brings them together and helps them connect with, and support.

“They have been my outlet during one of the hardest times in my life and I am so grateful to have them,” she said.

Tempio said she feels a responsibility to live her best and healthiest life. She believes she is “now living for my donor,” she said, and plans to “take the best care of this heart that I can.”

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Dr. Frank Darras. Photo from SBU

By Daniel Dunaief

Dr. Frank Darras, Clinical Professor of Urology and Clinical/ Medical Director of the Renal Transplantation Program at Stony Brook University Renaissance School of Medicine Hospital, has performed over 1,700 kidney transplants since 1990. 

This year has been especially challenging for the surgeon, as he has had to enhance safety procedures to protect patients who are on immunosuppressants during the COVID-19 pandemic.

As part of the new normal for kidney transplants, Stony Brook takes time to test patients for coronavirus. In the first few weeks after the virus hit Suffolk County, the tests took all day. In recent weeks, the labs have produced test results within one to three hours.

Through late April, Darras said the hospital hasn’t had to send anyone home who had a positive COVID-19 test.

The long-term effects of COVID-19 on the function of normal kidneys is difficult to predict, he said. Many of the patients with the most severe symptoms from the virus not only needed ventilators, but also needed dialysis treatments. In the majority of cases where people recovered from the virus, their kidneys also recovered.

The hospital has also seen patients who received kidney transplants who have contracted the virus. “Several of these [transplanted patients] had diminished function, but all of them recovered their kidney function,” Darras said.

The longer-term effects of the virus are unknown. Some patients who were severely ill may have recovered, but have kidney problems that slowly escalate over time.

“I would not be surprised to see that happen, whether that’s months or years down the road,” Darras said.

Another unknown is how the virus would affect the transplant community in the longer term. “In the worst case, it’ll make our living donor pool smaller,” he said. About one out of three kidney transplants comes from a living donor. “On the other hand, in the best case scenario, [the virus will have] relatively little impact. It’s too early to tell,” he added.

According to Darras, people who need kidney transplants can extend their life expectancy by two to three times. He estimated that about five to six percent of the people waiting for a transplant died while on a kidney waiting list.

Darras explained that “time is of the essence” for many patients because the “longer patients are on dialysis, the more urgent [the need] to get them transplanted,” and added that finding donors is critically important, particularly during the pandemic.

“There is a concern about trying to make sure that we can get enough kidneys,” he said. “Our job and the job of LiveonNY is to raise awareness about organ donation.”

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Bruce Stillman. Photo from CSHL

By Daniel Dunaief

Bruce Stillman, the CEO of Cold Spring Harbor Laboratory, last week won the Dr. H.P. Heineken Prize for Biochemistry and Biophysics, which is considered the most distinguished scientific prize from the Netherlands.

The prize, which has been awarded to 13 researchers who have gone on to win Nobel Prizes, includes a $200,000 award and a crystal trophy.

Stillman earned the award, which began in 1964 and is given every two years in categories including Medicine, Environmental Sciences and History, for his decades of work on mechanisms involved in the replication, or copying, of eukaryotic DNA.

The understated Stillman, who was born and raised in Australia, expects he’ll put the prize money into a foundation, although he hasn’t thought much about it given the other concerns that dominate his time, including not only running his own lab amid the COVID-19 pandemic but also overseeing a facility where he has been the Director since 1994 and its CEO since 2003.

Stillman said the lab has had “extensive discussions” among the faculty about whether to pursue additional research fields on an ongoing basis to combat the current virus as well as any future public health threats.

While CSHL is not an infectious disease center, the facility does have a historical precedent for contributing to public health efforts during a crisis. Indeed, during World War II, the laboratory helped create a mutated strain of fungus that increased its yield of the drug penicillin.

At this point, CSHL does not have a high containment facility like Stony Brook University where it can handle highly infectious agents.

“We may have to have one here,” Stillman said. “The reality is there are tons of infectious diseases” and the lab might need to repurpose its scientific skills towards coming up with answers to difficult questions.

Even without such a Biosafety Level 3 designation, CSHL researchers have tackled ways to understand and conquer COVID-19. Associate Professor Mikala Egeblad has been exploring whether neutrophil extracellular traps, which are ways bodies fight off bacterial infections, are playing a role in blood clotting and severe respiratory distress.

These NETS may be “promoting severe symptoms in COVID,” Stillman said. Egeblad is working on a case study with several other collaborators who have focused on these traps. Egeblad is also studying the effectiveness of NETS as a biomarker for the most severe patients, Stillman said.

CSHL is also investigating a small molecule compound to see if it inhibits viral infection. Researchers including Assistant Professor Tobias Janowitz are about to participate in a combined Northwell Health-CSHL double blind study to determine the effectiveness of famotidine, which is the active ingredient in the ulcer-treating medication Pepcid.

The coronavirus treatment, which will include patients who don’t require hospitalization, would require a higher dose than for heartburn.

As a part of this study, the scientists will use a patient tracking system that has been used for cancer to determine the effectiveness of the treatment through patient reporting, without requiring laboratory tests.

Stillman is pleased with how CSHL has “repurposed ourselves quickly, as have many institutions around the world.” He highlighted the constructive interactions among scientists.

The public health crisis has “generated a different kind of behavior in science, where there’s a lot of interaction and cooperation,” Stillman said. The preprint journal BioRxiv, which CSHL operates, has had nearly 5,000 papers about COVID-19 since January. The preprints have “not only helped disseminate information rapidly [to the scientific community], but they are also “being used to determine policy by government leaders.”

Stillman urged scientists to apply the same analytical technique in reading preprinted research that they do with peer-reviewed studies, some of which have required corrections.

As for the government’s response, Stillman believes a retrospective analysis will provide opportunities to learn from mistakes. “I don’t think the [Centers for Disease Control and Prevention] has done a very good job,” he said. He suggested that the well-documented problems with the roll out of testing as community transmission was increasing, was a “disaster.”

The CSHL CEO also said the balkanized medical system, in which every state has a different system and even some local communities have their own processes, creates inefficiencies in responding to a fluid and dangerous public health crisis.

Coordinating those efforts “could have been done very, very rapidly to develop a modern, clear [polymerase chain reaction] test of this virus and yet states and federal agencies had regulations about how these tests can be approved and controlled and regulated that are far too bureaucratic and did not set a national standard quickly,” he said.

He hopes agencies like the CDC, FDA and the Biomedical Advanced Research and Development Authority have better coordination. The country needs a national response, like it had after the Homeland Security effort following 9/11.

Optimistically, Stillman expects a therapeutic antibody will be available by the end of the summer to treat COVID-19. The treatment, which will use monoclonal antibodies, will likely be injectable and will be able to prevent infection for a month or two. These treatments could also help limit the severity of symptoms for people who have been infected.

Regeneron has taken the same approach with Ebola effectively. Stillman doesn’t think such treatments can be used with everybody in the world, which increases the need to develop a vaccine. Creating a safe vaccine, which could be available as early as next year, is a “massive, under-recognized undertaking.”

Between now and next year, a second wave of the virus is certainly possible and may be likely, given that other coronaviruses have been seasonal. 

“This happened with the influenza pandemic a century ago, so we have to be careful about this,” Stillman said. He believes that the medical community has learned how to treat severe patients, which should help mitigate the effects of a second wave in the United States. 

That may not be the case in developing countries, which is a “concern,” he said.

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METRO photo

By Daniel Dunaief

Daniel Dunaief

Hi, welcome to my store. It’s so good to see you after all these years. It hasn’t been years, I know, but it just feels like it because I’ve been a prisoner at home with my teenage children who have decided they are allergic to cooking, cleaning or almost anything else that has to do with helping around the house.

But, hey, this isn’t about me, it’s about you. You’re looking well, thank goodness. That’s the most important thing, right? This virus has been so hard on everyone, but I promised I wouldn’t say anything about the virus today.

Anyway, we have decided to move to a high touch environment because we can only have two people in our store at a time and one of them is me, which means you’ll have to leave the child you’re carrying in the stroller outside. 

You don’t have a stroller? No problem. I have a disinfected stroller just for this occasion that I can bring out from the back for you. In fact, I’m happy to sell it to you at a bargain price because I haven’t sold much of anything these days. I tried selling food to my teenage kids, but they just said I was a terrible cook, they weren’t hungry or they would be in their rooms and I shouldn’t bother them until 2021.

Oh, wait, there, I did it again. I’m so sorry. Silly me, I’m talking about myself. And, whoops, I see from your frown that you’re not happy I touched your shoulder when I made that joke. I have to make sure I socially distance. In fact, I have this new touch-the-shoulder-in-a-joking-way stick that’s exactly six feet long which I would also be happy to sell to you. I know it looks like two yard sticks taped together, which it kind of is, but it guarantees that you’ll be six feet away from everyone else. 

Yes, of course, I’m fine. Why do you ask? I’m so happy we’re entering Phase Two this week, you know? It’s a relief. I’m desperate for a haircut and I’m sure you are, too.

No, I didn’t mean to say that I thought you needed a haircut. Your hair looks great and the customer is always right.

Anyway, so I see you’re looking at those boots over there. What an excellent choice! You clearly have an eye for high fashion. I’m sure my daughter, who is on the other side of the plexiglass, wouldn’t mind taking them off and selling them to you.

Oh, you want new ones? Well, that may take a while because our shipment is in quarantine. Oh, no, wait, the shipment hasn’t even reached quarantine yet, so, ha ha, how about if you glance through the rest of the store while I pretend to read this dystopian book that I thought might be a good idea before we started to live in a dystopian society. 

What’s that? Oh, well, I’ve had a few cups of coffee this morning because I thought I’d need to be my sharpest and this stupid book kept me up all night. But, hey, I’m like a phoenix, returning to the world of selling and socializing and connecting with my customers, because that, after all, is the key to being successful in business.

Wait, no, please, don’t leave. I know your child is outside screaming. You can bring her in. It’s fine, really. In fact, can I give you a hug? I was kidding. That was a test and you passed, so, yay for you.

Oh, I see you’re really going. Well, tell your friends about the store. Did I mention that your hair looks great?

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Nancy Reich. Photo from SBU

By Daniel Dunaief

Even as pharmaceutical companies are working furiously to produce a vaccine for COVID-19, scientists are taking other approaches that might lead to treatment for this disease or for other viruses that might threaten public health.

Nancy Reich, a Professor in the Department of Microbiology and Immunology at the Renaissance School of Medicine at Stony Brook University, and several colleagues at SBU recently received a $450,000 grant from the G. Harold and Leila Y. Mathers Foundation to pursue the laboratory study of two possible interventions.

Reich and her colleagues plan to investigate the use of interferon-lambda, which is in clinical trials for Hepatitis D virus, and an inhibitor for bradykinin called icatibant, which is approved for angioedema.

“Although we are very hopeful for a vaccine in the near future, vaccines can take months or years” to develop and use, Reich said. “The likelihood is that there will be more emerging diseases” which increases the need for broad spectrum first line defense therapeutics that might provide relief and save lives.

A few months ago, several faculty in microbiology and immunology got together on a Zoom call to discuss what they could do to combat COVID-19. The group was “very enthusiastic” about interferon, which is a natural hormone and is the only cytokine that’s antiviral. It has the ability to prevent the spread of the virus by reducing replication.

Reich will work with Patrick Hearing and Erich Mackow, who are both professors in the Department of Microbiology and Immunology, on the molecular aspects of COVID-19. Associate Professor Janet Hearing and Assistant Professor Hwan Kim are certified to work in high containment biosafety laboratories.

COVID-19 seems to have figured out how to block the action or production of interferon, Reich said, although the lower levels of the hormone haven’t been confirmed yet.

Other researchers are testing how the virus that has caused the pandemic has blocked the production of this defense mechanism. The Reich-led group is also planning to test this process.

To get protection from interferon, people would likely need an increased amount of the antiviral molecule early in the infection process, Reich said. She and her team are focusing on interferon lambda, which is a specific type that primarily affect epithelial cells, which are the type of cells that line the respiratory and digestive systems.

Interferon alpha and beta cause systemic problems, which can trigger an overactive immune system to cause a cytokine storm. This can lead to severe symptoms, if the body’s reaction is strong enough.

“Because interferon lambda is more specialized in the targets it hits, it doesn’t cause this crazy, global effect in your body,” Reich said.

At this point, Reich is looking to use a pre-clinical animal model of COVID-19 to understand the processes involved with the virus and its reaction to different concentrations of this hormone at different times after infection.

Reich has reached out to a company called EIGR Pharmaceuticals, which is the only company that produces a pegylated version of interferon lambda. By adding polyethlylene glycol, or PEG, EIGR can extend the time that the drug remains in the body, reducing the need for new doses.

The interferon lambda receptors are prevalent in hepatocytes, or liver cells. The liver is particularly important in capturing bacteria, viruses and macromolecules that might otherwise cause harm in the human body. The interest in the liver and interferon is mainly because of hepatitis viruses.

Interferon lambda’s higher specificity reduces potential side effects that other interferons trigger in the blood or in the central nervous system. EIGR has created this interferon to treat Hepatitis D.

“I have contacted [EIGR] to do some COVID work and now they are,” Reich said. “They have some clinical trials going on in the United States, Israel and Australia.” In addition to their research work with interferon lambda, the group will also study the effects of bradykinin, which is a small peptide hormone that the angiotensin-converting enzyme 2 (or ACE2) receptor inactivates.

The group is exploring the use of inhibitors for bradykinin, hoping to reduce a molecular trigger that exacerbates symptoms of the disease.

“We are taking two approaches; one is more about the symptoms, through bradykinin inhibition, and the other is trying to block virus replication,” said Reich.

In their research with interferon and inhibitors to bradykinin, Reich is hoping to generate data that will be ready within several months.

If both of the approaches proves effective independently, Reich said the next steps could involve combining them.

If the combination works better than either of the treatments alone, the researchers, and, down the road, the doctors, who might use this approach could use a lower dose of both drugs, which could reduce any potential side effects.

Reich said this research is possible at Stony Brook because it has a Biosafety Level 3.“We are able to do these experiments that others may not be able to do,” she said.

The animal facility that will house the mice for her studies is still not accepting new animals. Reich hopes they start to accept them in June.

Reich appreciated the speed at which the Mathers Charitable Foundation reacted to their request for funds.

The Foundation, which was created by a Santa Barbara, California couple who donated their wealth to research in 1983, made a decision within weeks, reflecting the urgency that the public health crisis triggered by COVID-19 has created.

Many foundations typically take six to eight months to decide on funding.

Reich appreciates that she and her colleagues will have a chance to contribute to a growing body of research about a virus that has caused close to 100,000 deaths in the United States and has disrupted billions of lives around the world.

“Everybody realizes the urgency,” Reich said.

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Hundreds of protesters stand at the corner of Routes 112 and 347 in Port Jefferson Station Monday, June 1 to protest police violence, especially against people of color. Photo by David Luces

By Daniel Dunaief

Daniel Dunaief

Stepping outside of our homes presents risks. We could have a car accident on the way to work or a branch could fall on us, among myriad other potential dangers.

These days, the risks of leaving our homes have escalated. We could catch the dreaded coronavirus anywhere if we stand closer than six feet to anyone.

Nowadays, interactions that we engaged in all of our lives with friends and family, such as shaking hands or hugging, increase the risk of picking up the invisible enemy, bringing it to our home sanctuaries and infecting our partners, children, and parents.

We have learned to manage the risks we’ve now heard about for months by staying as far away from other people as we can and by wearing masks.

And yet, for some Americans, the risks of stepping outside of homes where we were hopefully safe most of the time, was clearly higher than it was for other Americans.

Indeed, the risks of dying from coronavirus differed by race. The age-adjusted death rate in Suffolk County for whites was 49.5 per 100,000 people, according to statistics from the Department of Health. For Hispanics on Long Island, that number is 108.7, which is more than twice the rate per 100,000 people. For blacks, the number is an astronomical 170.1 deaths per 100,000 people in the county, which is well over three times the rate for whites.

Those statistics generally track the disproportionate toll the virus has had on communities of color.

Now, layer on top of that the death of Minneapolis resident George Floyd. Seemingly at the worst possible time for our country, as businesses are just starting to reopen and as standing within 6 feet of each other increases the chance of our catching a virus that has claimed over 100,000 American lives, people are going outside in huge numbers across the country to express their outrage over Floyd’s killing at the seemingly indifferent hands of a white police officer who faces third-degree murder charges.

Those African-Americans who gather, at the risk of contracting an infection that has already wreaked havoc in their communities, are expressing anger and frustration at a justice system that appears anything but just.

The news coverage of the protests has often focused on the most explosive and terrifying events, where looting and setting fire to police cars and engaging in random acts of violence have occurred. Those shocking actions are inexcusable manifestations of those frustrations, turning justifiable disappointment into illegal acts. These moments also threaten to overshadow the message from so many others who would like to see constructive changes.

Many peaceful protestors, however, might have the same approach to the risks of joining others to protest Floyd’s murder that President Donald Trump (R) did to the notion of taking hydroxychloroquine, which may or may not reduce the health effects and dangers of COVID-19.

What, they might wonder, do they have to lose at this point?

The answer is not so simple, particularly as the risk of getting arrested, hit with a rubber bullet or vomiting from inhaling tear gas increases.

The dangers in stepping outside into a world filled with a virus that infects our bodies and cultural viruses that threaten the soul of the country are especially high in a year with overtones from the civil unrest of the 1960’s.

Peaceful protestors can and should demand and expect the kind of changes that will allow them and their children to step outside to a country where the risks from being out of their homes shouldn’t depend on the color of their skin.

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Jennifer Keluskar. Photo from SBU

By Daniel Dunaief

In the second of a two-part series, Times Beacon Record News Media describes the clinical and research work of Jennifer Keluskar, a Clinical Professor in the Department of Psychiatry at Stony Brook University.

Keluskar and Matthew Lerner, an Associate Professor of Psychology, Psychiatry & Pediatrics (see last week’s paper), recently received a grant from the Office of the Vice President for Research & the Institute for Engineering-Driven Medicine to study the effects of COVID-19-induced social isolation on people with Autism Spectrum Disorder. 

Keluskar spends half her time working at the Outpatient Department of Psychiatry, Child and Adolescent Services, where she provides cognitive behavioral intervention and ASD diagnostic evaluations for youth with autism, and the other half working on the SB Autism Initiative.

The pandemic has challenged young people with autism, as they manage through social isolation and worry about an uncertain future. Many of Jennifer Keluskar’s patients are struggling, with some dreading the return to school in the fall and others grappling with the removal or change in a routine or structure.

Some of her clients have felt increased pressure to organize their time and be productive amid a lack of peer support and without the opportunities to model their performance based on interacting with other students at school.

Through modeling, some students take notes when they notice their classmates writing down concepts or ideas a teacher is sharing or gaining some measure of reassurance when they see that everyone is struggling with the work load.

“This latter point is particularly relevant given the novelty of this situation for teachers as well as the consequent likelihood that they will have trouble knowing how much work to give, especially given the wide variety” of circumstances at home, Keluskar explained in an email.

For some students with autism who have a measure of social-anxiety disorder, the remote learning environment has provided some measure of relief, reducing the difficulty in reading nonverbal cues from their classmates and teachers.

Now that these students are learning remotely, these “social stressors have been lifted,” Keluskar said.

Nonetheless, even the patients who have felt relieved about fewer anxiety-inducing social interactions are starting to develop concerns about a potential resumption of classes in the fall.

Keluskar has already seen some patients who are perseverating on that future upcoming transition. “We are going to see more of it in my clientele as we get closer to reopening schools,” she said, adding that she has some patients who are afraid of not being able to advance in life, to college or to jobs, but who, at the same time, are afraid of taking the next step after getting used to quarantine.

Jennifer Keluskar with her husband Raja, 5-year-old daughter Skylar and three-year-old son Colby.

Working with Alan Gerber, a graduate student in Matthew Lerner’s lab at SBU, Keluskar will assess responses to COVID-19. They have sent out two questionnaires. One, which was released by other researchers, examines how the pandemic has affected circumstances and behaviors, from employment changes to junk food consumption. The other is an evidence-based measure of parental stress that is not specific to the virus. She is going to measure anxiety and depression to see how they change during quarantine. 

Keluskar appreciates how the Initiative offers programs such as a homework club, which students can attend virtually for an hour each day. “I have connected some of my clients in the clinic to undergraduate mentors and so far this has been quite successful” although the scale of these connections has been small so far.

The Initiative currently has a mentoring program geared towards older adolescents. She is planning to offer this program to younger individuals.

Deborah Gross, the Initiative’s coordinator, runs a program called the Sidekicks Squad, which is for older adolescents and young adults with special needs.

“Some of my patients would benefit from pairing with a mentor,” Keluskar said. “Through these mentoring sessions, people with autism hang out with their mentors.”

Child-directed interpersonal time is “so important for people’s well being and development,” Keluskar explained, referring to both the mentor and the mentee.

She appreciates that this mentoring program is laid back and fun and believes that mentors benefit just as much from it as mentees.

Through the Initiative, the group has also done eight weekly, Facebook livestream events. The organizers discuss a topic and add three tips at the end. The tips have provided suggestions, including: using creativity to engage children by adding special interests into activities; taking a collaborative problem solving approach when running into difficulties getting a child to cooperate; and understanding emotional underpinnings to children’s behavioral difficulties.

Keluskar recognizes the challenge that come from having self-directed resources available to children and their parents. Even when people have access to many resources, they do not always know where to begin or what to prioritize, she said.

She advises a parents to try to get enough rest for themselves. “You need to take care of yourself so you can model [appropriate behavior] to your children,” she said.

Through the pandemic challenges, Keluskar also urges parents to be creative in their responses to the stressors that are affecting them and their children. She suggests people to take chances in how they approach their interactions with anxious children.

“You can’t be creative if you’re afraid of being wrong,” she said. “Being able to move past little mistakes shows flexible control. Set limits and be structured, but also be flexible at the same time.”

A resident of Commack, Keluskar lives with her husband Raja Keluskar, who is an engineer, their five-year old daughter Skylar and their three-year old son Colby.

Keluskar said she has been anxious about public speaking since she was young and can empathize with others who struggle with this. Through Facebook groups and other efforts, she said she can “personally attest to the value of multiple exposures and say that it can even become enjoyable with time and practice.”

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Photo from METRO

By Daniel Dunaief

Daniel Dunaief

Our world is filled with all kinds of new terms, like social distancing, face coverings and viral peaks. We could use a few new terms to describe the modern reality, which might give us greater control over the unsettling world around us. How about:

Zoom Staging: The process of setting up our best artwork and most intelligent books behind us. We might have read “War and Peace” or “Crime and Punishment” or “An American Tragedy” in college. It’s time to find those and put them on the shelves behind us, leading to a deep discussion about our favorite books as we wait for other people to join the calls. We could also add a few adorable pieces of incomprehensible artwork from our children that none of our coworkers would dare criticize.

Curbworld: Even though we’re opening up parts of the economy starting this week, we still can only do some retail shopping through curbside pickup. We have become a world that exists at the curb, where retail space goes untouched and where curbs have become the intersection of our outings and the stuff we bring home.

Googleversity: To some extent, we were living in this world before the virus, but search platforms have become a critical part of our children’s home learning environment. In addition to listening to a professor with a headset or air pods on, our children are also frantically searching the web in real time to answer questions about the War of 1812 or about theorems that sound vaguely familiar.

Coviracy Theories: The world was filled with conspiracy theories before President Donald Trump (R) came along and will have plenty of conspiracy theories after he leaves. Still, the preponderance of conspiracy theories related to the virus should have its own lexicon, as people have blamed everyone from foreign governments to incredibly rich and successful technology geniuses for the virus.

Insertcollege.edu: Up until now, people have graduated from colleges where they had unique, on site experiences. This year, that’s not the case, as distance learning seems to have become something of a commodity, with professors of all talent levels struggling to engage a group of people remotely. None of the books we have that are supposed to help with the college hunt — and we have plenty of them now with a high school junior and a college freshman in our midst — help us differentiate among the online platforms of the institutions of higher learning. It’s unclear how, if at all, any of these institutions stands out.

SWSD: Second Wave Stress Disorder. Over the last several weeks, we have heard plenty about a coming second wave. In fact, some colleges that are reopening their doors this fall, such as North Carolina State University, plan to start their semester early, go through fall break and then send students home for an extended break that they hope allows them to avoid a second wave at school.

91 Divoc Dreams: Given the dream world, it seems fitting that we reverse the order of COVID-19 to suggest the upside down world that haunts our dreams, which is a mixture of the realities of our daily fears, anxieties and discomforts blended with the imaginative world of science fiction drama that we beam into our bedrooms that distract and unnerve us.

Masksession: Some of us have become obsessed with the right not to wear a mask, even as others feel an urgency to ensure everyone wears masks. The mask discussion has become an obsession.

2020 No More: To finish the vernacular, we should no longer consider perfect vision to be 20-20 because, after all, 2020 sucks. We could change it to 21-21 or anything else, where we don’t need to link the perfect vision of hindsight to this imperfect year.

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On Zoom screen, clockwise from top left, Committee member Hoi-Chung Leung; Committee Member Matthew Lerner; Eve Rosen; Committee Member Nicholas Eaton; Tamara Rosen; graduate student Cara Keifer; and Shira Yudkoff.

By Daniel Dunaief

On April 17, Tamara Rosen did something she had been anticipating for six years: she defended her graduate thesis.

Working in the lab of Matthew Lerner, who is an Associate Professor of Psychology, Psychiatry & Pediatrics in the Department of Psychology at Stony Brook University, Rosen had focused her efforts on the symptoms people with autism exhibit when they are anxious or depressed.

While the questions in her graduate thesis defense followed a pattern she anticipated, with professors asking her about the way she compiled her data and the conclusions she drew, the format wasn’t what she had expected.

Like so many other gatherings that had formerly been public events, Rosen’s thesis defense was broadcast by Zoom. The downside was that she wasn’t in the room with everyone, where she could have a discussion one on one. The upside was that her friends and family could tune in as easily as they do to work calls or other family gatherings. Indeed, Rosen’s mother, Marna; her step-mother Eve; and her father Dennis, all of whom share an appreciation for the work Tammy did for her thesis, watched the defense from start to finish, exulting in a landmark achievement.

“This was a really important day in our family’s history,” Dennis Rosen told his daughter, sharing the pride he felt for her.

“I always knew you were smart, but now I know you are brilliant,” her mother beamed.

After the call, Rosen saw her mother and stepmother overwhelmed with emotions, shedding tears for an achievement she sometimes needs to reassure herself really happened.

Rosen’s work focused on how anxiety and depression, two conditions that mental health professionals are concerned are becoming more prevalent amid the viral pandemic, have different symptoms in the population of people with autism spectrum disorder than they do for those who are not on the spectrum.

Based on prior research, Rosen wanted to account for the different symptoms in her follow-up analysis.

Prior studies have found that the traditional models of anxiety and depression do not adequately fit youth with autism. Others had suggested, but not tested, the notion that the Diagnostic and Statistical Manual model of these symptoms provides an ineffective model of anxiety and/or depression symptoms because of the influence of autism symptoms.

That is why Rosen specifically examined the influence of autism on these conditions in one of her analyses.

Among other findings, Rosen said that autism influences anxiety and depression. The prevalence of anxiety and depression is higher compared to the general population.

There are a range of clinical implications for her work, Rosen said.

Her work validates what clinicians are doing, which is to take the profile of autism into account when they treat anxiety.

Rosen moved to Colorado last July to start her internship year at JFK Partners at the University of Colorado School of Medicine, where she is also starting her post-doctoral clinical fellowship. She is treating clients with autism and anxiety and depression, which she said is in her “wheel house” of expertise.

Rosen is grateful for the support she received from Lerner and the program at Stony Brook. “It was great training,” she said.

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Matthew Lerner. Photo from SBU

By Daniel Dunaief

Though hampered by the pandemic in their direct contact with people who have autism, the founder of The Autism Initiative and research director Matthew Lerner along with the Head of Autism Clinical Education Jennifer Keluskar at Stony Brook University are managing to continue to reach out to members of the community through remote efforts. In a two-part series, Times Beacon Record News Media will feature Lerner’s efforts this week and Keluskar’s work next week.

Through several approaches, including improvisational theater, Matthew Lerner works with people who are on and off the autism spectrum on ways to improve social competence, including by being flexible in their approach to life.

In the midst of the ongoing pandemic, he has had to apply the same approach to his own work.

Lerner, who is an Associate Professor of Psychology, Psychiatry & Pediatrics in the Department of Psychology at Stony Brook University, recognizes that it’s difficult to continue a project called SENSE ® Theatre (for Social Emotional NeuroScience Endocrinology), where the whole function of the process is to provide in-person social intervention.

The SENSE Theater study is a multisite National Institute of Mental Health-funded project focused on assessing and improving interventions to improve social competence among adolescents with autism. The core involves in person intervention through group social interaction.

Matthew Lerner with his sons Everett,6, and Sawyer,2. Photo by Chelsea Finn

That, however, is not where the effort ends.“There are arms of that study that are more educational and didactic,” Lerner said. “We’re starting to think about how we could capitalize on that.”

In the ongoing SENSE effort, Lerner is coordinating with Vanderbilt University, which is the lead site for the study, and the University of Alabama.

Stony Brook is in active contact with the families who are participating in that effort, making sure they know “we are doing our best to get things up and running as quickly as possible,” Lerner said.

The staff is reaching out to local school districts as well, including the Three Village School District, with whom Lerner is collaborating on the project, to ensure that people know the effort will restart as soon as it’s “safe to be together again.”

Lerner is also the founder and Research Director of The Autism Initiative at SBU, which launched last year before the pandemic altered the possibilities for in-person contact and forced many people to remain at or close to home for much of the time. The initiative provides programs and services for the community to support research, social and recreational activities and other therapeutic efforts.

The Stony Brook effort initially involved video game nights, adult socials and book clubs. The organizers and participants in the initiative, however, have “stepped up in a huge way and have created, in a couple of weeks, an entirely new set of programming,” Lerner said.

This includes a homework support club, guidance, webinars and support from clinicians for parents, which address fundamental questions about how to support and adapt programs for people with autism. The group is keeping the book club active. The initiative at least doubled if not tripled the number of offerings, Lerner suggested.

Additionally, SBU has two grants to study a single session intervention adapted for teens with autism. The project has been running for about nine months. Lerner said they are looking to adapt it for online applications. For many families, such remote therapy would be a “real boon to have access to free treatment remotely,” he said.

Lerner had been preparing to conduct a study of social connections versus loneliness in teens or young adults with autism. Since COVID-19 hit, “we have reformulated that and are just about to launch” a longitudinal a study that explores the effects of the lockdown on well-being and stress for people who have autism and their families.

Lerner is looking at how the pandemic has enhanced the importance of resilience. He said these kinds of studies can perhaps “give us some insight when we return to something like normalcy about how to best help and support” people in the autism community. “We can learn” from the stresses for the community of people with autism during the pandemic.

To be sure, the pandemic and the lockdown through New York Pause that followed hasn’t affected the entire community of people with autism the same way. Indeed, for some people, the new norms are more consistent with their behavioral patterns.  “Some autistic teens and young adults have said things to me like, ‘I was social distancing before it was cool,’” Lerner said.

Another teenager Lerner interacted with regularly went to the bathroom several times to wash his hands. When Lerner checked in on him to see how he was doing amid the pandemic, he said, “I was made for this.”

Lerner also said people who aren’t on the spectrum may also gain greater empathy through the changes and challenges of their new routines. People find the zoom calls that involve looking at boxes of people on a full screen exhausting. After hours of shifting our attention from one box to another, some people develop “zoom fatigue.”

Lerner said someone with autism noted that this experience “may be giving the rest of us a taste of what it’s like for folks on the spectrum,” which could provide insights “we might not otherwise have.”

Even though some people with autism may feel like the rest of the world is mirroring their behavioral patterns, many people in and outside the autism community have struggled with the stresses of the public health crisis and with the interruption in the familiar structure of life.

The loss of that structure for many with autism is “really profound,” which is the much more frequent response, Lerner said. “More kids are telling us they are stressed out, while parents are saying the same thing.” In some sense, the crisis has revealed the urgency of work in the mental health field for people who are on and off the spectrum, Lerner said.

The studies in autism and other mental health fields that come out of an analysis of the challenges people face and the possible mental health solutions will likely include the equivalent of an asterisk, to capture a modern reality that differs so markedly from conditions prior to the pandemic. There may be a new reporting requirement in which researchers break down their studies by gender, age, race, ethnicity, income and “another variable we put in there: recruited during social isolation.”

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