In a fractured and uncertain world, the skill sets that make us marketable to potential friends, employers and neighbors have shifted.
Sure, competence, professionalism and experience can and do come in handy in the context of numerous environments. These days, though, getting along with others and navigating through the cacophony of frustration beamed into our living rooms and phones on an hourly basis seems to have elevated what otherwise might seem like trivial skill sets in another time.
I have come up with a list of skills or, perhaps more appropriately, qualities that might be helpful in the modern world.
I don’t overuse the word “literally.” To emphasize a point, people often literally throw the word “literally” into phrases, as in “I literally hate tofu.” I’m not sure you can figuratively hate tofu, but I don’t overuse that word.
I keep a straight face: even when confronted with outrageous claims in which others hold fast to ideas, to heroes or to patterns I find questionable or even objectionable, I don’t wince, roll my eyes or shout them down until I’m in the safe space of my home with my wife.
I know how to write a handwritten note. Electronic communication has become so ubiquitous that sharing a personal touch that comes from writing something by hand has scarcity value.
I have trained my dog to do exactly what he wants. Sure, other people have trained their dogs to sit, roll over, fetch the newspaper and come to them when they call, but my dog does exactly what he wants. That means when he wags at me, he’s genuinely excited to see me and he’s not just wagging because he’s expecting some immediate reward or punishment.
I can find almost anything in a supermarket. Having spent an embarrassing amount of time searching the supermarket for foods that satisfy four diets and that take the place of in-person dining and social interactions, I can find most items sooner than supermarket employees.
Through a hard-target search of every bed sheet, blanket and pillowcase, I can find the remote control. While that may seem trivial, it shows a willingness to go the extra mile to avoid having to take a few extra steps to change the channel.
I speak teenager. Yes, they are wonderful people who not only have a shorthand way of speaking, but also have a tendency to multitask while they are talking, looking at their phones or speaking through a mouthful of food. I can interpret much of what they say even when they appear to be offering disconnected sounds in a guttural and frustrated language.
I can finish an entire chapter in a non James Patterson book without checking email or texts. That means I can concentrate for longer periods of time. Patterson is excluded because the chapters in his violent novels are often shorter than this column.
I can make myself laugh. Every week, I enter the New Yorker cartoon contest. The captions I write never win, but they make me laugh.
I have a wealth of untapped ideas. I look at all the masks around me and think, “Hmm, I could come up with so many new mask products.” For example, how about mood masks, which change color depending on the person’s mood? Or, perhaps, masks with the outline of states, presidents of the United States, or images of abolitionists, important women in history or slogans? Masks could become the equivalent of educational posters hung on the walls of classrooms or, if you prefer, facial bumper stickers, giving someone starting at our covered mouths a chance to read or see something new.
Preserving the oceans of the world will take more than putting labels on sensitive areas or agreeing on an overall figure for how much area needs protection.
It will require consistent definitions, guidelines and enforcement across regions and a willingness to commit to common goals.
A group of 42 scientists including Ellen Pikitch, Endowed Professor of Ocean Conservation Sciences at the School of Marine and Atmospheric Sciences at Stony Brook University, recently published a new framework developed over more than 10 years in the journal Science to understand, plan, establish, evaluate and monitor ocean protection in Marine Protected Areas (MPAs).
“We’ve had MPAs for a long time,” said Pikitch. Some of them are not actively managed, with activities that aren’t allowed, such as fishing or mining, going on in them. “They may not be strongly set up in the first place to protect biodiversity. What this paper does is that it introduces a terminology with a lot of detail on when an MPA qualifies to be at a certain level of establishment and protection.”
These scientists, who work at 38 institutions around the world, created an approach that uses seven factors to derive four designations: fully protected, highly protected, lightly protected, and minimally protected.
If a site includes any mining at all, it is no longer considered a marine protected area.
Fully protected regions have minimal levels of anchoring, infrastructure, aquaculture and non-extractive activities. A minimally protected area, on the other hand, has high levels of anchoring, infrastructure, aquaculture and fishing, with moderate levels of non-extractive activities and dredging and dumping.
Using their own research and evidence from scientific literature, the researchers involved in this broad-based analysis wanted to ensure that MPAs “have quality protection,” Pikitch explained. “The quality is as important, if not moreso, than the quantity.”
The researchers are pleased with the timing of the release of this paper, which comes out just over a month before the United Nations’ Convention on Biological Diversity, which will meet virtually in October. Over 50 countries, including the United States, have already agreed to protect 30 percent of the ocean by 2030.
Pikitch called this a “critical time to get this information in front of decision makers.” The meeting will occur in two parts, with the second one set for an in-person gathering in China in April.
The point of the paper is to “help clarify what is an MPA, how do we distinguish different types and their outcomes,” Pikitch added.
The people who attend the CBD meeting range from high level government officials all the way up to the president of small countries.
About a decade ago, an earlier convention targeted protecting 10 percent of the oceans by 2020. The world fell short of that goal, with the current protection reaching about 7.7 percent, according to Pikitch.
Indeed, amid discussions during the development of this new outcome-based approach to MPAs, some researchers wondered about the logic of creating a target of 30 percent within the next nine years even as the world fell short of the earlier goal.
Some people at the meetings wondered “should we be pushing these things when a lot of them are failing?” Pikitch recalled of a lively debate during a meeting in Borneo. “Part of the answer is in this paper. These [earlier efforts] are failing because they are not doing the things that need to be done to be effective. It definitely helped us inform what we should be thinking about.”
Enabling conditions for marine protected areas go well beyond setting up an area that prevents fishing. The MPA guidelines in the paper have four components, including stages of establishment, levels of protection, enabling conditions and outcomes.
The benefits of ensuring the quality of protecting marine life extends beyond sustaining biodiversity or making sure an area has larger or more plentiful marine life.
“More often than not, it’s the case that MPAs do double duty” by protecting an environment and providing a sustainable resource for people around the area, Pikitch said. Locally, she points to an effort in Shinnecock Bay that provided the same benefits of these ocean protection regions.
In the western part of the bay, Pikitch said the program planted over 3.5 million hard clams into two areas. In the last decade, those regions have had an increase in the hard clam population of over 1,000 percent, which has provided numerous other benefits.
“It demonstrates the positive impact of having a no-take area,” Pikitch said.
At the same time, the bay hasn’t had any brown tides for four straight years. These brown tides and algal blooms can otherwise pose a danger to human health.
By filtering the water, the clams also make it easier for eel grass to grow, which was struggling to survive in cloudier waters that reduce their access to light. With four times as much eel grass as a decade ago, younger fish have a place to hide, grow and eat, increasing their abundance.
Being aware of the imperiled oceans and the threats humans and others face from a changing planet has sometimes been a struggle for Pikitch.
The marine researcher recalled a time when four hurricanes were churning at the same time in the Atlantic.
“I went to bed and I have to admit, I was really depressed,” Pikitch said.
When she woke up the next morning, she had to teach a class. She regrouped and decided on a strategic message.
“This is reality,” she told her class. “We have to accept this is the world we made. Everything we do that can make a positive difference, we do.”
Pikitch is encouraged by the work done to develop a new MPA framework.
These protected areas “provide a sustainable pathway to ensure a healthy ocean and to provide a home for future biodiversity,” she said.
Joe, the gentleman at the supermarket register, asked me the routine questions.
“Did you find everything okay?”
“Do you have a rewards number?”
I nodded and typed in my cell phone number.
At the end of the order, I carefully watched the total, waiting for the moment he asked me whether I wanted to donate a dollar or round up my total.
Instead, it looked like the cost declined, even after applying all the discounts. In order to be sure, I had to remove my glasses, which allow me to see at a distance, but not to read.
Yes, the total decreased by 5%. Just as I was about to thank him, I went slack jawed behind my mask. Staring closely at the total in the register, I realized he had given me the senior discount.
I pondered what to do. I could tell him I’m not a senior. Then again, maybe anyone over 35 was a senior. Okay, fine, 40. Alright, 50.
Anyway, I thanked him for ringing me up, told him to stay safe and headed to the car, where I promptly checked the age for a senior discount at my supermarket. Yup, just as I suspected. He gave me the discount well before I was eligible.
As I loaded the groceries in the car, I wondered whether this was a freakout mid-life crisis moment. Maybe this was the universe’s way, through Joe, of reminding me that I’m not a kid anymore.
Then again, I thought, steadying myself behind the wheel, maybe Joe had just typed that senior discount button by mistake. Maybe he felt generous or, perhaps, he was giving everyone a senior discount, just to stick it to his bosses.
I have an image of myself that doesn’t align with what other people see, or even what I notice in the mirror. Somewhere along the lines, my brain imagined that the younger, fresher, more energetic version of me continued to type on my computer, yell at the TV when the Yankees lost, and maneuver through my life.
My body, and the unwelcome hair that seems to wave from my ears, has offered reminders about the passage of time. Recently, my son, who is still waiting for his freshman year to start in earnest after New Orleans recovers from Hurricane Ida, asked me if I wanted to have a catch.
Excited for some father-son bonding that doesn’t involve electronics, I readily agreed. Besides, it’s been a few years since he asked. I am no longer his coach and he has numerous athletic friends and former teammates who can launch balls across a field.
The first few throws felt comfortable, as my fingers reached for the familiar seams and tossed the ball back at his chest.
“Okay, move back,” he instructed.
A few throws later, he asked me to move back again.
“Wait, what?” my arm begged, to a brain that tried to hit the mute button on muscles, tendons, bones and rotator cuffs begging me to stop engaging in such unaccustomed activity.
Pretty soon, he was throwing lasers from the next county and I was trying to figure out if I could strap the ball to a nearby bird to return it to him.
Instead, I ran 20 steps, rotated my hips and snapped my shoulders in an effort to minimize the strain on my arm.
“Good idea,” he yelled. “You should soft toss it back to me.”
Soft toss? That was one of my hardest throws!
Two days later, we repeated the same routine. The second time, my arm instantly hurt. I might imagine that I’m 25 or even 35, just as I might imagine I can fly.
I can enjoy some consolation: the senior discount saved me enough money to buy an ice pack for my throbbing shoulder.
Chemist John Moses on the campus of Cold Spring Harbor Laboratory. Photo from CSHL
By Daniel Dunaief
If you build it, he will come.
That’s an iconic line from the movie “Field of Dreams,” starring Kevin Costner, in which a mythical voice calls to the Iowa farmer, encouraging him to plow through his corn to build a baseball field so the ghosts of past baseball players can entertain a modern audience.
It seems only fitting that this year, in which Major League Baseball hosted its first professional game in Iowa near the set of the popular movie, chemists have built something they hope brings together numerous other chemicals to produce products with various applications, from drug discovery to materials science.
About 120 years ago, researchers in France discovered a highly reactive gas called thionyl tetrafluoride, whose chemical symbol is SOF4.
The gas has numerous potential applications because researchers can control its reactions and derivatives. Scientists can swap each sulfur-fluorine bond with a bond between sulfur and something with desirable properties or applications.
While the gas serves as a potential building block, it is scarce and is not commercially available.
Thionyl tetrafluoride is “very reactive,” said chemist and Cold Spring Harbor Laboratory Professor John Moses. “It’s not something the Average Joe wants. It’s dangerous chemistry.” It was largely overlooked until the 1960’s, when chemists at DuPont reinvestigated it.
Once Suhua Li, the lead author of a recent paper in Nature Chemistry and a former post doctoral researcher in Nobel-prize winner K. Barry Sharpless’s lab at Scripps Research Institute in La Jolla, California, generated more of this gas, the team could work together to determine the types of connections that might be possible.
While the research was a group effort in terms of planning and ideas, Li, who did the vast majority of the synthesis of the gas, is “the hero,” Moses said. “The gas itself, and reagents used to make the gas, are potentially very dangerous, and it takes courage and confidence to attempt such chemistry. ([Li] even had a bit of a mishap, to say the least, but still went ahead and tried again.”
Moses also appreciates how “ideas are just ideas until somebody takes the initiative to put them into practice.”
Moses, Sharpless, and Scripps Research Institute Associate Professor Peng Wu developed the polymer chemistry, while Hans Zuilhof of Wageningen University in the Netherlands helped elucidate the helical structure of the polymers.
The team used a technique Sharpless calls “click chemistry” to explore the substances they could create with this gas.
Thionyl tetrafluoride acts like a lego building block that can be connected with other building blocks in several dimensions.
Click reactions create defined products with absolute reliability, Moses explained. Scientists get what they expect, which is not always true in chemistry.
“In some reactions, you take A and B and you don’t always get C,” Moses said. “You get C as a major product, but you also get D, E and F.”
In click chemistry, however, the combination of A and B is guaranteed to produce C.
Some click reactions run better in water, or at least when water is present. Water is non-toxic, inflammable, inexpensive and a good heat sink.
Click philosophy is about using reliable reactions for the purpose of function discovery.
With thionyl tetrafluoride, Li and the other researchers made about 30 polymers, each of which had original structures using different fragments.
The group managed to attach antibiotics to a thionyl tetrafluoride-derived polymer and demonstrated that it retains antibacterial function.
As long as the module has a handle to exchange with the sulfur-fluorine bond, the gas has a broad range of potential applications.
With thionyl tetrafluoride as his inspiration, Moses coined the term multidimensional click chemistry, which identifies the gas a multi dimensional hub.
The chemists used a regular party balloon to transfer the gas, which is connected to a syringe and a needle. They inserted the needle through a rubber septum into a sealed flask. The reaction with reagents in the flask is straightforward to perform once the gas is available, Moses said.
Born and raised in Wrexham, North Wales, a town aglow after actors Ryan Reynolds and Rob McElhenney last year bought a 156-year-old local soccer team, Moses had no interest in science when he was young, although he was curious about life in general.
He left school to work in a factory that made life rafts and buoyancy jackets when he was 16.
The factory had a distinct odor of toluene and glue.
“It was dreadful,” he recalls. “I was lucky to escape that life.”
He eventually landed an apprenticeship at a company called App-Chem, that allowed him to study physics and chemistry in college one day per week.
The pain in my abdomen climbed from a relatively mild one, which pediatrician’s offices usually represent with a slightly puzzled but still pleasant stick figure face, all the way to a 10, with a crying stick figure in extreme duress, in under five minutes.
Doubled over, I shuffled to my wife’s working station in our house and sat, uncomfortably, in a chair next to her.
She started to talk and then looked carefully at my face.
“What’s wrong?” she asked as I twisted in my seat.
“I have serious pain in my abdomen and back,” I said.
We knew what that likely meant. We’d been through this before, although last time was much more terrifying because we had no idea what was going on. Also, six years ago, the mysterious symptoms, including searing back pain, uncontrollable nausea and vomiting and extreme discomfort, appeared and disappeared. I might have had some reaction to bad food, we thought, or I might have inadvertently consumed my food kryptonite, dairy.
“It’s probably kidney stones,” my wife said, as she stood on my back to try to relieve some of the developing pain.
I twisted on the floor, hoping I wouldn’t have to go to an emergency room that was likely overwhelmed with the latest Delta variant wave of COVID-19.
I did the I’m-okay-and-can-tough-it-out-at-home-but-wait-maybe-I’m-not dance for about 10 minutes before I gave in and shuffled towards the car.
As soon as I got in the garage, I made a quick u-turn and headed to the closest bathroom, where I knelt next to the toilet and vomited.
“It’s another kidney stone,” I sighed in between heaves.
With a bucket in the backseat on the way to the hospital, I contorted my body into different positions, hoping to find one that would offer some relief. The last kidney stone episode taught me that wasn’t likely, as I did everything but stand on my head in the basement all those years ago to ease the unrelenting pain.
Fortunately, the emergency room only had two people waiting on a Friday morning. My wife spoke through a plexiglass shield with the receptionist, sharing my details while I disappeared beneath the counter into a crouched position.
The receptionist directed my wife outside until I had a room. I waited on the floor, with the same bucket at my side, for a nurse to call me.
During the 20 minute wait, the pain eased up just enough to allow me to breathe more normally and to sit on the floor. A chair was still not an option. The two other people in the waiting room were too engrossed in their phones to notice me.
Once I was in an examining room, I called my wife, whose sympathetic eyes and encouraging words eased some of my discomfort. She answered questions from the nurse as I stood on the floor and leaned the top of my body over the hospital bed as if I were praying.
The nurse promised to return with morphine. In the few minutes he was gone, I felt closer to a four on the pain scale.
I considered not taking the narcotic. The roller coaster ride along the pain pathway makes managing kidney stones, and so many other types of discomfort, difficult. Each moment of comfort is like a sliver of sunlight between heavy rain clouds.
The doctor confirmed our kidney stone diagnosis. He thought I’d pass the stone that night or the next day. I didn’t have any such luck, as I fought through symptoms for 10 days.
Finally, the obstruction exited. I was so elated that I jumped up and down in the garage with my baffled son, who was returning from an errand.
As others who have had kidney stones can attest, the experience is extraordinarily uncomfortable and painful. I feel fortunate for all the support from my wife, children, brothers, mother and friends. I can only imagine what people hundreds of years ago must have thought when these stones made their painful journey.
Last Friday around 10:30 am, our son, who just arrived at his freshman dorm 12 days earlier, asked how quickly I could get him on a flight back home.
I dropped what I was doing and searched for flights out of New Orleans. We knew he was in the path of Hurricane Ida and had been hoping, as Long Island had done the week before with Hurricane Henri, that he and the city would somehow avoid the worst of the storm.
His college had provided regular updates, indicating that the forecasts called for the storm to hit 90 miles to their west. That would mean they’d get heavy rain and some wind, but that the storm, strong as it might become, might not cause the same kind of devastation as Hurricane Katrina had exactly 16 years earlier.
By Friday, two days before its arrival, my son, many of his friends, and his friends’ parents were scrambling to get away from the Crescent City amid reports that the storm was turning more to the east.
Fortunately, we were able to book a mid-day flight the next day. An hour later, he texted me and said he might want to stay on campus during the storm, the way a few of his other friends were doing. I ignored the message.
Two hours later, he asked if he still had the plane reservation and said he was happy he’d be leaving.
Later that Friday, another classmate tried unsuccessfully to book a flight, as the scramble to leave the city increased.
My wife and I became increasingly concerned about his ride to the airport, which, on a normal day, would take about 30 minutes. We kept pushing the time back for him to leave, especially when we saw images of crowded roadways.
He scheduled an Uber for 9:30. On Saturday morning at 6 a.m. his time, he texted and asked if he should go with a friend who was leaving at 9 and had room in his car. Clearly, he wasn’t sleeping too much, either.
I urged him to take the earlier car, which would give him more time in case traffic was crawling. He got to the airport well before his flight and waited for close to two hours to get through a packed security line.
When his plane was finally in the air, my wife and I breathed a sigh of relief. We both jumped out of the car at the airport to hug him and welcome him home, even though we had given him good luck hugs only two weeks earlier at the start of college.
After sharing his relief at being far from the storm, he told us how hungry he was. The New Orleans airport had run low on food amid the sudden surge of people fleeing the city. After he greeted our pets, who were thrilled to see him, he fell into a salad, sharing stream-of-consciousness stories.
The next day, he received numerous short videos from friends who stayed during the storm. While we’d experienced hurricanes before, the images of a transformer sparking and then exploding, videos of rooms filling with water from shattered windows, and images of water cascading through ceilings near light fixtures were still shocking.
He will be home for at least six weeks, as the city and the school work to repair and rebuild infrastructure. During that time, he will return to the familiar world of online learning, where he and new friends from around the country and world will work to advance their education amid yet another disruption from a routine already derailed by COVID-19.
We know how fortunate he was to get out of harm’s way and how challenging the rebuilding process will be for those who live in New Orleans. When he returns to campus, whenever that may be, we know he will not only study for his classes, but that he and his classmates will also contribute to efforts to help the community and city recover from the storm.
Three families and their foundations jump-started a research mission on Long Island that offers a chance for change. Their stories reflect a desire to remember their family members and a need to offer hope and help to others.
Christina Renna
Christina Renna with sister Rae Marie Renna
Phil Renna waited while his 16-year old daughter Christina spoke with her doctor. He and his wife Rene had decided to allow their daughter, who was battling a form of connective tissue cancer called rhabdomyosarcoma (RMS), to be involved in decisions about her treatment.
When Christina came out of the room, Phil, director of operations in the communications department at Cold Spring Harbor Laboratory, asked if he should also speak with the doctor. Christina said it wasn’t necessary. On the way home, she told him it had to be a “really good Christmas.”
He knew what that meant, although she also asked him not to tell anyone how close she was to the end of her life.
Renna and parents throughout the country have had to cope with the agony of rhabdomyosarcoma, which mostly affects children. People battling this cancer have turned to medicine for help, only to find that the treatment options are limited.
That, Renna and others say, was as unacceptable to them when their children were battling cancer as it is now, when the next generation is struggling with this illness.
RMS doesn’t receive the same level of funding nationally as cancers that affect more people, such as breast, lung and prostate cancer, but the agony and suffering are just as significant.
Amid their battles with the disease, families have turned to their support groups, including friends, extended family, and community members to raise funds for basic research, hoping grass roots efforts allow future generations to have longer, healthier lives.
Supported by these funds and a willingness to fill a research gap, Cold Spring Harbor Laboratory CEO Bruce Stillman has backed efforts to gather information and to support research that may also help people with other forms of cancer.
Renna, who lives in Lindenhurst, struggled with his role as father and protector when Christina developed rhabdomyosarcoma.
“I’m supposed to protect my kids,” Renna said. “I should be able to tell them, ‘It’s going to be okay.’”
Renna went to Stillman to ask whether Christina, who was a patient at Memorial Sloan Kettering, might get better care somewhere else.
After conducting some research, Stillman told his colleague about the lack of basic research and other treatment options.
“That was a crushing moment for me,” Renna said.
During treatment, Christina had to be at Memorial Sloan Kettering at 7 a.m., which meant he and Christina’s mother Rene got in the car at 5 a.m. with their daughter.
Renna dropped them off, drove back to work, where he’d put in a full day, drive back to the hospital and return home at 10:30 p.m.
“That was every night, five days a week,” Renna recalled. While those were tough days, Renna said he and his wife did what they needed to do for their daughter.
Five years after his daughter died at the age of 16, Renna drove home from work one day to find his shirt was wet. It took him a while to realize the moisture came from the tears, as he cried his way back to his house. At one point, he thought he had post-traumatic stress disorder.
Renna continues to raise money to support research into this disease, while also helping people create and develop their own foundations, often after enduring similar pain.
“Every single foundation that has come and given money to the lab, I have personally met with,” he said. “I helped our advancement team onboard them.”
As someone who has lost a child and understands what a parent can be feeling, Renna is committed to helping others cope with their grief.
“For me, it is about helping the lab, but also about helping families honor the memory of their child in a meaningful way and what better way than to help another family and perhaps find a cure,” he wrote in an email.
Renna believes investments in research will pay off, helping to answer basic questions that will lead to better treatments down the road.
So far, the foundation has given $387,300 to Cold Spring Harbor Laboratory for research. They also gave $50,000 to Make-a-Wish in Suffolk, and $25,000 to local scholarships. The foundation supported Memorial Sloan Kettering with an iPad program. Ultimately, Renna believes in the ongoing return from research investments.
“Everybody wants to find and fund the silver bullet,” he said. “Everybody wants to give money to fund a clinical trial. Basic research is where the discoveries are made.”
Renna urged people creating foundations to have a strong board that included business people and that might also have a scientific or medical advisory element. He also suggested funding foundations a year ahead of time. That helped his foundation in 2020, when finding donors became more challenging during the pandemic.
Being at Cold Spring Harbor Laboratory and helping others get through darker days that are all too familiar to him gives Renna comfort. “I know, in some way, every single day, I’m making an impact,” he said. “How measurable it is, I don’t know. There are days when I’m pretty proud.”
As far as he feels they have come, Renna said it’s not the time to look back, but to press ahead.
T.J. Arcati
A former summer intern in Bruce Stillman’s lab when he attended Notre Dame, T.J. Arcati was married and had two children when he succumbed to sarcoma.
“We know what we went through,” said his father, Tom Arcati, an oral and maxillofacial surgeon in Huntington. “He left a son and a daughter without a dad.”
Tom and his wife Nancy, who raised T.J. in Lloyd Harbor and live in Huntington, were with their son for his treatments and therapies.
Tom and Nancy Arcati are determined to extend people’s lives by more than a year or two and are actively engaged with other families who are coping in the midst of the cancer storm. “I’m talking to people now that unfortunately are going through what we did seven years ago,” Tom Arcati said.
While the Arcatis support other families, their empathy “brings you back to a place you never really leave,” Nancy Arcati said. These interactions “keeps T.J.’s life on people’s minds and in their hearts.”
Tom Arcati tries to be a source of solace to people who are trying to gather information.
In the aftermath of TJ’s death at the age of 34, Arcati reached out to Stillman to see if the lab could work towards better treatments.
One Saturday, Arcati and his son Matthew went to Stillman’s house, where they sat in his living room, with Stillman drinking tea and Arcati having coffee.“What do you think?” Arcati recalled asking. “Are you going to do sarcoma research?” Stillman looked back at his guest and mentioned that he was thinking about it. Stillman called Arcati a few days later.
“When he called me, he said, ‘We’re a cancer institute. We should be doing sarcomas.’ That’s how I remember this whole thing going down. It was pretty heart warming.”
The first step for CSHL was to host a Banbury conference. The site of international meetings on a range of scientific topics since 1978, the Banbury center brings together experts in various fields. The meetings provide a forum for scientific advances and result in various publications. By holding a Banbury Center meeting, CSHL helped advance research into sarcomas.
The Arcatis have remained active in the Friends of T.J. Foundation, which TJ and several college friends founded in 2009 after T.J. was diagnosed with sarcoma. They have stayed in close contact with CSHL Professor Chris Vakoc and his PhD student Martyna Sroka, who regularly keeps him informed of her progress. Sroka has spoken at some of the outings for the Friends of TJ Foundation. This year, Stillman will speak at the September 13th fundraiser at the Huntington Country Club.
“It’s really imperative that people who are supporting us know what their dollars are being spent on,” Arcati said.
The Friends of TJ Foundation has raised about $50,000 each year, bringing their total fundraising to about $400,000.
Arcati hopes something positive can come out of the losses the families who are funding Vakoc’s research suffered.
“If we can save one kid’s life somewhere by doing what we’re doing, then this whole process is worth it,” Arcati said.
Michelle Paternoster
Michelle Paternoster of Lindenhurst developed sarcoma in her sinuses. Her husband Paul Paternoster helped her through 38 surgeries, over 90 radiation treatments and several rounds of chemotherapy.
Michelle and Paul Paternoster
The couple tried immune therapy in the Bahamas in the fall of 2008 and went to New York in 2011 for treatment.
“We drove [to the city] for 90 days” excluding weekends, Paternoster recalled. The treatments seemed to have a positive effect during the trial, but shortly afterward, the cancer continued growing.
After Michelle died in 2013 at the age of 34, Paternoster was determined to help others, initially asking supporters to contribute to the fundraising effort from the Arcatis.
Donations to the Friends of T.J. Foundation reached $30,000, which helped underwrite the Banbury conference at Cold Spring Harbor Laboratory. Michelle and T.J. had seen each other in the radiation suite in the halls of Memorial Sloan Kettering.
Paternoster then started the Michelle Paternoster Foundation for Sarcoma Research. The President of Selectrode Industries Inc., which manufactures welding products and has two factories in Pittsburgh, Paternoster wanted to help people at a clinical level.
Through Michelle’s Clubhouse, he partnered with the Children’s Hospital of Pittsburgh, paying for hotels of pediatric cancer patients when the Ronald McDonald house is full. The clubhouse also provides gift cards to help pay for gas, tolls and copays on prescriptions.
“Knowing how difficult it is to go through this, I can’t imagine what it’s like to not have that capability” to pay for basic needs during treatment, Paternoster said. “That is why it is so important for our board to do something at the clinical level to support families in this battle.”
Paternoster said the relatively small but growing size of the group dedicated to helping each other makes each person’s contribution that much more important.
“Normally, when you’re doing any kind of charity work, you feel like you’re a tiny part of this project, especially when it comes to [diseases like] breast cancer and things that impact millions of people,” Paternoster said. When he attended the Banbury conference that launched the research effort at Cold Spring Harbor Laboratory, he said “you felt you could make a difference. You’re sitting in a room with 25, 30 people max. That was the entire effort to eradicate this disease.”
Paternoster, who lives in Cold Spring Harbor, called the collaboration that came out of the meeting “astounding.”
The Michelle Paternoster Foundation has raised $500,000, with about $350,000 of that supporting the work at Cold Spring Harbor Laboratory.
Ultimately, like the other families who raise funds, stay informed and offer help to strangers battling an all-too-familiar disease, Paternoster feels that the opportunity to make a meaningful contribution inspires him.
“That’s our dream,” he said, “to find a cure, so other people don’t have to feel what we felt.”
A group of people may prove to be the guardian angels for the children of couples who haven’t even met yet.
After suffering unimaginable losses to a form of cancer that can claim the lives of children, several families, their foundations, and passionate scientists have teamed up to find weaknesses and vulnerabilities in cancers including rhabdomyosarcoma and Ewing sarcoma.
Rhabdomyosarcoma affects about 400 to 500 people each year in the United States, with more than half of those patients receiving the diagnosis before their 10th birthday. Patients who receive diagnoses for these cancers typically receive medicines designed to combat other diseases.
Christopher Vakoc. Photo from CSHL
A group of passionate people banded together using a different approach to funding and research to develop tools for a different outcome. Six years after the Christina Renna Foundation and others funded a Banbury meeting at Cold Spring Harbor Laboratory, the grass roots funders and dedicated scientists are finding reasons for optimism.
“I wish I could run up to the top of a hill and scream it out: ‘I’m more hopeful than I’ve ever been,’” said Phil Renna, director of operations, communications department at CSHL and the co-founder of the Christina Renna Foundation. “I’m really excited” about the progress the foundation and the aligned group supporting the Sarcoma Initiative at the lab has made.
Renna and his wife Rene started the foundation after their daughter Christina died at the age of 16 in 2007 from rhabdomyosarcoma. Renna’s optimism stems from work Cold Spring Harbor Laboratory’s Christopher Vakoc, a professor and Cancer Center co-director and his research team, including PhD candidate Martyna Sroka have performed.
The cause for optimism comes from the approach Vakoc has taken to cancers, including leukemia.
Vakoc has developed a way to screen the effects of genetic changes on the course of cancer.
“Usually, when you hear about a CRISPR screen, you think of taking out a function and the cell either dies or doesn’t care,” Sroka said, referring to the tool of genetic editing. Sroka is not asking whether the cell dies, but whether the genetic change nudges the cellular processes in a different direction.
“We are asking whether a loss of a gene changes the biology of a cell to undergo a fate change; in our case, whether cancer cells stop growing and differentiate down the muscle lineage,” she explained.
In the case of sarcoma, researchers believe immature muscle cells continue to grow and divide, turning into cancer, rather than differentiating to a final stage in which they function as normal cells.
Through genetic changes, however, Sroka and Vakoc’s lab are hoping to restore the cell to its non cancerous state.
Cold Spring Harbor Laboratory has had success with other diseases and other types of cancer, which is where the optimism comes from, explained Paul Paternoster, President of Selectrode Industries, Inc. and the founder of the Michelle Paternoster Foundation for Cancer Research.
As a part of her doctoral research which she’s been conducting for four years, Sroka is also working with Switzerland-based pharmaceutical company Novartis AG to test the effect of using approved and experimental drugs that can coax cells back into their muscular, non-cancerous condition.
The work Sroka and Vakoc have been doing and the approach they are taking could have applications in other cancers.
“The technology that we’ve developed to look at myodifferentiation in rhabdomyosarcoma can be used to study other cancers (in fact, we are currently applying it to ask similar questions in other cancer contexts),” said Sroka. “In addition, our findings in RMS might also shed light on normal muscle development, regeneration and the biology of other diseases that impact myodifferentiation, e.g. muscular dystrophy.”
Martyna Sroka’s journey
Described by Vakoc as a key part of the sarcoma research effort in his lab, Martyna Sroka, who was born and raised in Gdańsk, Poland, came to Long Island after a series of eye-opening medical experiences.
In Poland, when she was around 16, she shadowed a pediatric oncology doctor who was visiting patients. After she heard the patient’s history, she and the doctor left the room and convened in the hallway.
Martyna Sroka. Photo by Sofya Polyanskaya
“He turned to me and said, ‘Yeah, this child has about a month or two tops.’ We moved on to the next case. I couldn’t wrap my head around it. That’s as far as we could go. There’s nothing we could do to help the child and the family,” said Sroka.
Even after she started medical school, she struggled with the limited ammunition modern medicine provided in the fight against childhood cancer.
She quit in her first year, disappointed that “for a lot of patients diagnosed with certain rare types of tumors, the diagnosis is as far as the work goes. I found that so frustrating. I decided maybe my efforts will be better placed doing the science that goes into the development of novel therapies.”
Sroka applied to several PhD programs in the United Kingdom and only one in the United States, at Cold Spring Harbor Laboratory, where she hoped to team up with Vakoc.
Sroka appreciated Vakoc’s approach to the research and his interest in hearing about her interests.
“I knew that we could carve out an exciting scientific research project that tries to tackle important questions in the field of pediatric oncology, [the] results of which could potentially benefit patients in the future,” she explained in an email.
The two of them looked at where they could make a difference and focused on rhabdomyosarcoma.
Sroka has “set up a platform by which advances” in rhabdomyosarcoma medicines will be possible, Vakoc said. “From the moment she joined the sarcoma project, she rose to the challenge” of conducting and helping to lead this research.
While Sroka is “happy” with what she has achieved so far, she finds it difficult at times to think about how the standard of care for patients hasn’t changed much in the last few decades.
“Working closely with foundations and having met a number of rhabdomyosarcoma patients, I do feel an intense sense of urgency,” she wrote.
Maurizio Del Poeta in his laboratory at Stony Brook University. Photo by Antonella Rella
By Daniel Dunaief
Researchers at Stony Brook University, the University of Arizona and Wake Forest University School of Medicine in North Carolina may have found an enzyme that drives the worst COVID-19 symptoms. Secreted phospholipase A2 group IIA, or sPLA2-IIA may lead to severe symptoms and death, making this enzyme a potential therapeutic target.
P116, Maurizio DelPoeta, Microbiology
In an examination of plasma samples from 127 patients hospitalized at Stony Brook University Medical Center between January and July 2020 and a mix of 154 patient samples from Stony Brook and Banner University Medical Center in Tucson between January and November 2020, scientists including Distinguished Professor Maurizio Del Poeta of the Renaissance School of Medicine at Stony Brook University found that 63 percent of people with concentrations of the enzyme that were over 10 nanograms/ milliliter generally died. Most healthy people have circulating levels of the enzyme around 0.5 nanograms/ milliliter.
“It is possible that sPLA2 levels represent a tipping point and when it reaches a certain level, it is a point of no return,” said Del Poeta.
The collaborators involved in the study, which was published this week in the Journal of Clinical Investigation, were encouraged by the finding.
“This is exciting as it is leading to really novel connections for COVID-19,” Yusuf Hannun, Director of the Cancer Center at Stony Brook and a contributor to the research who participated in the discussion and data analysis, explained in an email. “It may lead to both diagnostics (for risk prediction) and therapeutics.”
Looking closely at the levels of sPLA2-IIA together with blood urea nitrogen, or BUN, which is a measure of the performance of the kidney, the researchers in this study found that the combination of the two measures predicted mortality with 78 percent accuracy.
“That is an opportunity to stratify patients to those where an inhibitor” to sPLA2-IIA could help patients, said Floyd Chilton, director of the University of Arizona Precision Nutrition and Wellness Initiative and senior author on the paper, said.
While they found a difference in the amount of the enzyme between healthier and sicker patients, the scientists recognize that this could reflect a correlation rather than a causation. The progression of the disease and the threat to people’s lives may come from other contributing factors that also intensify the severity of the illness.
“These studies do not establish causality at the moment, but the strength of the correlation and the known functions of this enzyme raise the possibility of participating in the pathology of the disease,” Del Poeta explained.
Floyd Chilton. Photo from University of Arizona
Indeed, Chilton has studied sPLA2-IIA for over three decades and has described some patterns in other diseases, including sepsis.
The enzyme performs an important role in fighting off bacterial infection by destroying microbial cell membranes. When the concentration of sPLA2-IIA rises high enough, however, it can threaten the health of the patient, as it can attack and destroy cells in organs including the kidney.
The enzyme “plays a critical role in host defense,” said Chilton. “These same systems can really turn on the host.”
In order to determine a causative link between sPLA2-IIA and the progression of the disease, Chilton, Del Poeta and others will need to increase their sample size.
“We’ve been very fortunate at getting individuals at some of the top global organizations… who have connected me with medical centers” that have a larger patient population, Chilton said. These executives may be able to expedite the process of expanding this study.
In the 1990’s, scientists studied an inhibitor that had the ability to act on the enzyme.
That effort had mixed results in phase 2 clinical trials.
“In 2005, the first phase of the phase 2 clinical trials were highly encouraging,” Chilton said. “It really inhibited mortality at 18 hours” by reducing severe sepsis. The second part of those tests, which used a slightly different protocol, failed.
While he’s not a clinical trials expert, Chilton is hopeful that researchers might find success with this same drug to treat COVID-19.
Only clinical trials would reveal whether inhibitors would work with COVID-19, scientists said.
As with many drugs, inhibitors of sPLA2-IIA have side effects.
By blocking the activity of these enzymes, “we do also decrease the production of arachidonic acid, which is a precursor of prostaglandins,” said Del Poeta. “In condition of hyperinflammation, this is a good thing, but prostaglandins are also important in a variety of cellular functions” including blood clots and starting labor.
Chilton pointed out that sPLA2-IIA is similar to the active enzyme in rattlesnake venom. It can bind to receptors at neuromuscular junctions and disable the function of these muscles, he explained.
In nature, some animals have co-evolved with snakes and are no longer susceptible to these toxins. Researchers don’t yet understand those processes.
While copying such evolutionary solutions is intriguing, Chilton said he and his collaborators are “much more interested in the inhibitors” that were taken through clinical trials in 2005 because that might present a quicker solution.
The research collaboration started with Chilton, who partnered with Arizona Assistant Research Professor Justin Snider. The first author on the paper, Snider earned his PhD at Stony Brook, where he knew Del Poeta well.
Snider “knew what a great researcher [Del Poeta] was. I also knew [Hannun] in a former life. We were both working on similar biochemistry 20 to 25 years ago,” Chilton said.
Chilton called the efforts of his Stony Brook collaborators, including Research Assistant Karen You, Research Associate Professor Chiara Luberto and Associate Professor Richard Kew,“heroic” and explained that he and his colleagues recognize the urgency of this work.
“I’ve been continuously funded by the [National Institute of Health] for 35 years, and I’m very grateful for that,” Chilton said. “There is nothing in my life that has felt this important,” which is why he often works 18 hour days, including on weekends.
After studying the effects of variants on the population, Chilton recognized that building a firewall against COVID-19 through vaccinations may not be enough, especially with the combination of lack of access to the vaccine for some and an unwillingness to take the vaccine from others.
“We may have to go to the other side of the equation,” HE said. “We’ve got to move to specific therapeutics that are agnostic to the variant.”
We packed our bags full of dreams, hopes, clothing and cliches and took our son to college. We pondered the journey, which is really what’s it’s all about, and not the destination.
My wife and I were bursting with pride, thinking about the shining light that is our son.
We wondered what advice we could offer before we returned to a house that would feel so empty without him. We thought a good rule of thumb might be to avoid harebrained ideas, although we knew we could do better at preparing him for future dark and stormy nights.
As he took his first steps onto his new campus, we encouraged him to discover the world and himself at the same time.
We shared the butterflies that fluttered among our four stomachs. Like a good soldier in our family’s mission, his sister joined us for this momentous occasion, prepared to offer her version of older sibling advice and to help find whatever item he might need in a college dorm he is sharing with a stranger he’d chosen from a grab bag of potential roommates.
As we followed the move-in directions to a tee, we could feel the electricity in the air. We drove up to an official behind a desk, who was all ears listening to him spell a last name chock full of vowels.
With bated breath and sweaty palms, we waited with every fiber of our beings until she found him on the list. We breathed a sigh of relief when she found his name and handed him a key that would open his dorm room to a new world of possibilities. As a freshman, he knew he was no longer the big man on campus he had been during his pandemic-altered senior year.
Once inside his dorm, we got down to the business of unpacking. We debated where to put his shoes even as he stared out the window, considering where he might plant his feet.
Recognizing that time was of the essence, we spring to life while unpacking his room. Standing apart in a small room full of wonders, we drew strength from our collective mission.
Slowly but surely, we removed the contents of his boxes, creating order from the chaos despite a few moments when we felt like we were all thumbs. We lined all his ducks in a row, creating neat rows of pencils, pens and notebooks on his desk and boxers, shorts, tee shirts and socks in his drawers.
After we prepared his room, we wiped the sweat from our brow, reminding him that this effort was but a drop in the bucket of the work he’d need to do in college.
We assured him he could bet his bottom dollar he wouldn’t feel like a babe in the woods or a fish out of water for long.
We could almost hear the angelic chords as the sun set in the west, where it always sets because that’s the way the cookie crumbles, or, rather, the earth rotates.
Before we left him in his new home away from home, we exchanged embraces and urged him to dance to the beat of his own drum.
We also suggested he find a healthy way to blow off steam, to recognize that a rising tide lifts all boats, to swim when it was time to sink or swim, and to play his cards right.
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