Stony Brook WTC Wellness Program clinic. Photo from Stony Brook Medicine
Dr. Benjamin Luft remembers the feeling of being prepared to treat 9/11 survivors and then no one arrived at the hospital.
Dr. Benjamin Luft is the director and principal investigator at Stony Brook WTC Wellness Program. Photo from Stony Brook Medicine
Stony Brook University was among local medical facilities that were prepared for the arrival of 9/11 victims when Luft was the chairman of the Department of Medicine. He said, like others, he had seen the towers falling on television, and from the 16th floor of SBU’s Health Sciences Tower, he could see the smoke from the World Trade Center.
“The idea was that there was going to be real mass casualties, and that this would overwhelm the system in New York,” he said.
Medical teams from various departments met in the conference room of the Department of Medicine, but he said “it became obvious as time went on, that there was no one coming to Stony Brook.”
“It was eerily ominous, because we began to understand that either people had escaped the buildings, or … that there were relatively few survivors from the attack itself,” the doctor added.
He said anyone seeking treatment stayed in the city, and the hospitals in Manhattan weren’t overrun as originally anticipated.
Luft, who is now the director and principal investigator at Stony Brook WTC Wellness Program, said after the tragic day he visited Ground Zero to see what was happening at the site. It was there he witnessed what first responders were being exposed to while working.
“It was obvious that there was going to be a lot of responders that were going to become ill as a result of that, because there was a tremendous amount of dusts and toxins in the air,” Luft said. “There was a lot of fire, burning, and there was a lot of fumes that came off of burning plastic and electronics.”
He added there were traumatizing events that people at the site experienced such as seeing bloody human parts and, for earlier responders, people jumping out of the towers.
He said shortly after September 11, local labor leaders met with him and told him how many of those first responders lived on Long Island and were getting sick. He learned that while many were insured, their insurance wasn’t covering their health issues due to them volunteering and not doing what the insurance companies considered on-the-clock work while helping to clean up and recover victims at Ground Zero.
The struggle of the Long Island first responders led to the development of the Stony Brook WTC Wellness program. In 2002, patients at first were just screened and monitored and then in 2005 doctors began treating them. Luft said in the early days of the program SBU Department of Medicine employees would volunteer to treat the patients. Over time the program began to receive financial resources to expand its services.
The Suffolk location of the Stony Brook WTC Wellness Program is located on Commack Road in Commack. Photo from Stony Brook Medicine
Luft said the program follows the cases of approximately 13,000 Long Islanders in both Nassau and Suffolk counties, with one clinic in Commack and the other in Mineola. At first, patients were displaying acute reactions to their exposure. Cases included asthma, upper respiratory disease, sinusitis and gastrointestinal disease, he said, due to the amounts of dust the patients had taken in during their time at Ground Zero.
Over the years, the doctor said patients began developing illnesses such as cancer, but doctors have also seen psychiatric problems such as PTSD and depression.
The responders “had seen people die,” he said. “They were in danger all the time.”
Doctors are also seeing cases of dementia in patients. Luft said one theory is that when a person is exposed to certain toxins it can increase their chances of having dementia. He gave the example where areas with higher pollution have much higher rates of Alzheimer’s.
With studies showing that patients with PTSD have cells that age more quickly, the WTC Wellness Program began monitoring patients.
“We saw something that stunned us, and quite frankly at first we were very skeptical,” Luft said. “We went through a variety of different studies and tests to confirm our results.”
Twenty years after September 11, the doctor said it’s possible that first responders will present with more health issues in the future, but no one can be certain with what illnesses.
The Stony Brook WTC Wellness Program’s Suffolk County office is located at 500 Commack Road, Commack.
Suffolk County Police Second Squad detectives are investigating a motor vehicle crash that killed a dirt bike operator in East Northport the night of Sept. 4.
Nicholas Woodworth, 13, of Greenlawn was operating a Honda dirt bike when he went through a traffic light at the intersection of Larkfield Road and Pulaski Road and was struck by a 2020 Chevrolet Equinox driven by Mary Mollica, 49, of East Northport. The teenager was transported to Huntington Hospital where he was pronounced dead.
The vehicle and dirk bike were impounded for safety checks. Anyone with information on this crash is asked to call the Second Squad at 631-854-8252.
It’s been a difficult 18 months, especially when we think back to the early days of the pandemic as we watched businesses across our communities adjust to state mandates after COVID-19 raged through our area. From limiting capacity to some businesses not being able to operate at all, many owners had difficulty adjusting.
Despite the lifting of state mandates a few months ago, many are still suffering.
As we look around more and more, places are closing or are in jeopardy of shutting down. In the last two weeks, we have heard the news of the Book Revue in Huntington set to close by Sept. 30. After 44 years of business, the village staple is in a financial hole.
The store had been shut down for three months during the pandemic. Once it was reopen, the business struggled to get back on its feet, and the owner fell behind on the rent.
To the east, Smithtown Performing Arts Center is having trouble holding on to its lease of the old theater. The nonprofit is also behind in its rent and has been unable to make a deal with the landlord, which led him to put the theater up for sale two weeks ago.
Both businesses received assistance during the pandemic. The Book Revue, like many others, was fortunate to receive loans through the federal Paycheck Protection Program to pay employees’ salaries and keep the lights on. For SPAC, the nonprofit received a Shuttered Venue Operators Grant but needs to have a full account of debts to be able to reconcile grant monies.
With the pandemic lingering, what many people are discovering is that the assistance just artificially propped them up for a short while. Now more than ever, local businesses and nonprofits need the help of community members to enter their storefronts and buy their products. When a consumer chooses between shopping or eating locally instead of online or going to a big chain, it makes a difference.
If one looks for a silver lining in all this, it may be that many business owners have come up with innovative ways to stay open, while others have embraced curbside pickup and created websites and social media accounts that will be an asset in the future.
And while it’s sad to see so many favorite businesses closing their doors, it also paves the way for new stores with fresh ideas to come in with items such as different types of ice cream or creative giftware or clothing.
Many of our main streets need revitalization and the arrival of new businesses or current ones reinventing themselves can be just what our communities need to reimagine themselves — and not only survive but thrive in the future.
We can all help small local businesses stay afloat, whether it’s an old staple or a new place. Because at the end of the day, if a store or restaurant has been empty and the cash register reflects that, we’ll see more and more empty storefronts in our future.
As the new school year begins, students will have to wear masks once again. File photo from Smithtown Central School District
What a difference a month, or two, makes.
The percent of positive tests in Suffolk County on Aug. 29 stood at 5.1% with a 4.7% positive seven-day average, according to data from the Suffolk County Department of Health.
That is considerably higher than just a month earlier, with a 3.2% positive testing rate on July 29 and a 2.7% rate on a seven-day average. The increase in infections for the county looks even more dramatic when compared with June 29, when positive tests were 0.2% and the seven day average was 0.4%.
“With the highly transmissible delta variant of SARS-CoV-2 [the virus that causes Covid-19] circulating, we are urging everyone who is eligible to get the COVID-19 vaccine as soon as possible,” Gregson Pigott, commissioner of the Suffolk County Department of Health Services, wrote in an email. “We also advise residents to wear masks when indoors in public.”
With students returning to school during the increase in positive tests, including those who are under 12 and ineligible to receive the vaccination, Pigott explained that he was concerned about the positive tests in the county.
Nationally, the spread of the Delta variant is so prevalent that the Director for the Centers for Disease Control and Prevention Rochelle Walensky at a White House briefing urged people who are unvaccinated not to travel during the Labor Day weekend.
While area hospitals aren’t seeing the same alarming surge towards capacity that they did last year, local health care facilities have had an uptick in patients who need medical attention.
“The increased community transmission is concerning as it is correlating with hospital rates also slowly rising,” Bettina Fries, chief of the Division of Infectious Diseases at Stony Brook Medicine, wrote in an email.
Meanwhile, most of the patients hospitalized at Huntington Hospital are younger, from children who are transferred to people in their 20s to 50s, explained Adrian Popp, chair of Infection Control at Huntington Hospital/ Northwell Health, in an email.
As schools in the area prepare to return to in-person learning, Renaissance School of Medicine at Stony Brook University has been coordinating with officials to prepare for a safe return to in-person learning.
“Stony Brook faculty are working with a diverse group of school districts in planning for the upcoming school year,” Sharon Nachman, chief of the Division of Pediatric Infectious Diseases at Stony Brook Children’s Hospital, explained in an email.
In recent weeks, Stony Brook Children’s Hospital has had few pediatric hospitalizations for COVID-19, with more pediatric positive cases in the outpatient setting.
Area hospitals including Stony Brook and Huntington Hospital continue to have strict guidelines in place for health care workers including social distancing, hand washing and the proper use of personal protective equipment.
Amid increasing discussion of the potential use of boosters, Stony Brook awaits “formal guidance and will continue to follow all DOH directives on vaccine administration,” Fries wrote.
Ida and Covid
Outside of Long Island, Hurricane Ida has the potential to increase the spread of the virus, as larger groups of people crowd into smaller spaces.
The hurricane “may become a super spreader event since vaccination rates in the South are low and people may crowd into shelters or at home indoors,” Popp explained. “I am concerned not only about the hospital capacity in Louisiana, but also of the impact the hurricane can have on hospital functioning.”
Popp cited a loss of power, lack of supplies, and the difficulty for ambulances trying to reach patients in flooded areas.
The Thompson House sustained flooding in East Setauket. Photo from WMHO
Cars try to navigate through flooding on Reynolds Street in Huntington Station. Photo from Town of Huntington
A property on Old Post Road in East Setauket acquired a big new pond after the storm. Photo from Joh Broven
A tree blocks traffic on Colonial Drive in Huntington. Photo from Huntington
A tree knocked down wires on Caledonia Road in Huntington. Photo from Town of Huntington
A downed tree in Lloyd Harbor. Photo from PSEG Long Island
Many North Shore residents spent their Thursday cleaning up after remnants of Tropical Depression Ida pummeled the Island Wednesday night. In addition to the storm, the National Weather Service issued a tornado warning for the North Shore of Suffolk County.
According to PSEG Long Island, the hardest-hit areas on the Island include Northport, Ridge, Lloyd Harbor and Huntington.
Huntington
In the Town of Huntington, flooding outside of the Huntington Sewage Treatment Plant on Creek Road left several motorists stranded, according to a press release from the town. STP staff accessed the facility via payloader late in the evening on Sept.1. During the peak of high tide, STP staff were unable to access the plant from the main entrance on Creek Road or from the rear entrance near the Mill Dam gates.
“We actually had to take a payloader out to the Creek Road entrance to bring one of our employees into the plant last night,” said John Clark, the town’s director of Environmental Waste Management. “Several cars, including a police vehicle, were stuck on Creek Road and New York Avenue — at least one driver (a police officer) had to be removed via boat by the Huntington Fire Department.”
Steve Jappell, a wastewater treatment plant operator at the STP facility, operated the payloader and assisted fellow employee Joe Lombardo and the police officer, who was ultimately transported from the scene by the Huntington Fire Department in a rescue boat.
“Thank you to the Huntington Fire Department, as well as Centerport, Halesite and Northport fire departments, who also arrived to assist other stranded motorists on Creek Road, and to our quick-thinking staff at the plant,” said town Supervisor Chad Lupinacci (R).
According to the press release, the area received its largest rain event in nearly 20 years between 7 p.m. and 1:30 a.m. The town reported that 6.29 inches fell during the 6 ½ hours.
While the STP usually processes around 1.8 million gallons per day, between 6 a.m. Sept. 1 and 6 a.m. Sept. 2 it processed more than 3.8 million gallons. According to the town, the plane “will continue to experience above average flow rates over the next two days as groundwater intrusion and sump pump activity contribute to the increased volumes.”
Town officials also said there were 26 reports of flooding mostly in Huntington; 29 reports of downed trees and branches; 16 reports of large pieces, sections and layers of asphalt ripped away, five manhole covers washed aside and one possible sinkhole was reported in Northport as asphalt washed away on Oleander Drive.
As for town facilities both golf courses had some flooding and were closed Sept. 2, and Town Hall had about ½ inch of flooding in the basement.
Smithtown
According to Smithtown Public Information Officer Nicole Gargiulo, there was flooding in the Smithtown Town Hall basement; however, there was no other damage to equipment or facilities in the town.
During the peak of the storm, the town received calls about flooded roads, but the streets were cleared as of the morning of Sept. 2.
Callahan’s Beach sustained damage, according to Gargiulo. The beach had already been closed due to damage after a storm in the early morning hours of Aug. 27.
Stony Brook University
Students in the Mendelsohn Community of Stony Brook University, which is located on the North end of campus off of Stadium Drive, were the SBU students most affected by the storm. According to communications sent out by the university, while other areas of the campus experienced flooding conditions, Mendelsohn was the most affected and students needed to be relocated.
Also affected by the storm was the Student Brook Union, and the building is closed for damage assessment and cleanup. The university held a ribbon cutting ceremony for the newly renovated student union building last week. Employees who work in the building were asked to work remotely Sept. 2.
In an email from Rick Gatteau, vice president for Students Affairs, and Catherine-Mary Rivera, assistant vice president for Campus Residences, “the Mendelsohn buildings have no power due to 4-6 feet of water in the basement, resulting in a power failure to the building. At this time, it is unsafe to be in the building while our teams pump out the water, assess the damage, and determine the timeline for repairs.”
Mendelsohn residents were not required to attend class on Sept. 2.
Three Village
During the storm, the historic Thompson House in East Setauket took in 33 inches of water in its basement. Some of the water rose up to the first floor of the 1709 structure.
The building, which belongs to the Ward Melville Heritage Organization, will need to have the water pumped out, according to WMHO President Gloria Rocchio. After the water is pumped out, a cleanup company will have more work ahead of them to prevent any more damage.
According to the National Weather Service, 6.86 inches of rain fell in Setauket. The NWS reported that it was the highest rainfall total on Long Island.
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.
Rarely do I sort the jumbled contents of my drawers. With a burst of energy, I did just that the other day, and I was rewarded with an archaeological find. There, toward the back, where I had clearly put it for safekeeping, was a $25 United States Saving Bond that had been given to my husband in 1950.
Curiously, it happened to be exactly on the day and month of our second son’s birth many years later. But I digress.
Back to the matter of the bond. What to do with this bit of Series E antiquity?
First thought was to bring it to my friendly banker, who searched for the serial number on the web and found it was worth $147 and change today. OK, not too bad, since it originally cost $18.75. At least the gift has kept up with inflation.
Next were the requirements for cashing the bond. That has proven not to be so simple for a couple of reasons. First, there is another name listed as the recipient on the front. It is that of his mother. The name on the face of the paper reads this way: that of my husband OR that of his mother.Whoever gave him the bond probably thought it was a good idea to have the parent involved as a backup. After all, my husband was just a teenager then. So, not only do I have to supply key information about my husband, like social security number and death certificate. I also have to produce the names of my mother-in-law’s parents, the county in which she died, her last residence, along with her social security number and her date of death in order to get her death certificate. Well, that’s not happening. At least not without some huge sleuthing.
At this point, kudos to my banker, who will not give up. And we do have a couple of lucky breaks here. She was born in the United States, so presumably, a death certificate can be found. Further, one of my husband’s siblings and his wife thankfully are still alive, with both retaining every single brain cell. They could tell me where she lived and her parents’ last name. They had no idea of her social security number, nor could they recall where she died. My daughter-in-law, called in to help, was able to use the internet and found her date of death.
Another kink in the thread is that the last name of both is misspelled, with an extra ‘f’ on the end. The gifter did not know their correct spelling. My brother-in-law assured me she did not spell their name that way. I don’t know how much of an obstacle that will be in this age of computer exactness.
The biggest challenge remaining is to determine in which county she died. She lived in Queens, she may have died in a Manhattan hospital, or she may have been living in an adult home in Nassau County, near her daughter, at the time of her death. I will be paying $23 and some change in order to file for a search of that elusive certificate. Perhaps I will have to do that three times.
This is not about money now. I know both those people listed on the bond would want to be made whole lo these 71 years later. I owe it to them to continue the search. Besides, as my banker explained, this is the first such conundrum he has been presented with, and he will learn from it and know how to deal with the next one.
For my part, I will consider any money I should ultimately receive, as the 1936 Bing Crosby song goes, pennies from heaven.
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.
A scene from the Greenlawn Fire Department's Parade in 2019. Photo by Sara-Megan Walsh
It’s back! The Greenlawn Fire Department’s Fireman’s Fair, 23 Boulevard Ave., Greenlawn will return on Sept. 2 (parade night), Sept. 3, Sept. 4 and Sept. 6. The schedule is as follows:
Fireman’s Parade at 7 p.m. Thursday along Broadway in Greenlawn
7 to 11 p.m. Thursday through Saturday.
Closed on Sunday.
5 to 11 p.m. Monday.
New York State’s longest-running Fireman’s Fair, the event will feature lots of family fun, food and raffles with great prizes. Rain dates are Sept. 10 and 11. For more information, call 631-261-9106.
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