Enrico Scarda, owner of Danfords, with Jami Cohen at the fundraiser for her sister. Photo by Julianne Mosher
By Julianne Mosher
The Brookhaven Ballroom at Danfords was filled with hundreds of people to celebrate and support one of their own this week through the family’s bout with cancer.
Dara Cohen. photo from Dara’s GoFundMe health fund
Dara Cohen, originally of Dix Hills, has been living under the weight of cancer for years, battling Stage 4 breast, brain and lung cancer, and now friends said it has metastasized in her lower spinal cord. The actress and professional dancer works as a ballet teacher when she feels up to it, but the disease has had a lasting effect.
It was just a few months ago when Dara Cohen’s sister, Jami, who bartends at the hotel in PJ, came to work and asked her managers if they could help her create a fundraiser.
The goal was to raise $100,000 for the 46-year-old dancer, singer and actress.
“They immediately said yes,” Jami Cohen, of Port Jefferson, said. “I couldn’t ask for better people to work with.”
On Monday, Nov. 11, Danfords donated its space upstairs and an extensive menu at its buffet to the Cohen family.
“Obviously it’s an unbelievable cause,” Enrico Scarda, owner of Danfords, said, “And we do whatever we can to support our employees.”
Lamar Peters with Gail King and Shelly Cohen. Photo by Julianne Mosher
A DJ blasted music while people mingled. Lamar Peters, a tribute artist known for his Elvis, Johnny Cash and Buddy Holly impersonations, came out to play, and over 100 gifts were donated to the raffle table.
“All of us are here to unite and break course for Dara,” Dara’s father Shelly Cohen said. “We’re looking to make a difference and these people are coming out to help our daughter.”
Tickets were $40 for the three-hour event and the outcome was a huge success. Although Dara couldn’t be in attendance, she video-called in and was grateful for the response given in her honor.
Known for her popular social media posts chronicling her journey, Dara’s goal has been to help other people struggling as well.
“She’s an amazing person,” Dara’s mother Karen Deangelis, said. “Dara has made an impact on other people and has a tremendous amount of support … Hopefully we can help other people, too.”
Ryan Augusta and two of his children. Photo from East Wind
The culinary industry will come together to support an executive chef who is currently battling an aggressive and rare cancer. On July 31 from 7 to 11 p.m., East Wind Long Island in Wading River will host a Super Ryan Fundraiser in honor of Ryan Augusta, who in 2018 was diagnosed with squamous cell carcinoma.
Ryan Augusta’s kids dress up as Superman to support their father. Photo from East Wind
After undergoing surgery and medical treatments, it seemed that the cancer was in remission. However, recently he found out that the cancer had returned and is now more aggressive. Augusta has endured another major surgery and will undergo 34 rounds of radiation and chemotherapy treatments, causing a financial strain to his family.
Augusta has been working at East Wind for over three years and manages a staff of about 50 people. The executive chef lives in East Northport with his wife, Christa, and their three children.
Christa Augusta said she is blown away and thankful for what East Wind is doing.
“They put this all together on their own, as soon as they found out about his [Ryan’s] surgery in May,” she said.
The mother of three said she is grateful to all the people, staff and chefs putting in time and energy into the fundraiser.
“We are looking forward to a great night with people we love,” she said. “This will give my husband strength.”
Charlotte Cote, director of marketing at East Wind, said Augusta’s work ethic is second to none.
“It is a pleasure to work with Ryan on a daily basis — he is the type of person that makes your job easier because he’s always ahead of the game and his staff is ready to go,” she said.
The fundraiser will feature well-known professional chefs and restaurateurs from Long Island to Las Vegas who dedicating their talents to the event. Each chef is expected to have an active workstation.
Sixteen professional guest chefs will lend their talents to the fundraiser, including local chefs such as Steve Gallagher of The Trattoria in St. James, John Bauer of Danfords in Port Jefferson, Justin Scarfo of Ruggero’s in Wading River and John Louis, of Maui Chop House in Rocky Point.
Food purveyors will be Prime Foods & Braun Seafood, all brought together by Ralph Perrazzo from BBD’s Las Vegas-Beers Burgers Desserts
Ryan Augusta, top, Christa Augusta, bottom, and their children. Photo from East Wind
“Chef Ryan is a valued member of our close-knit family here at East Wind and we are committed to give him our unconditional support for his hard work and dedication in this time of need,” Lou Ambrosio, general manager at East Wind said.
Five breweries will also be on hand serving their signature brews, including Sand City Brewing Company of Northport, Barrier Brewing of Oceanside, Root & Branch in Copiague, Evil Twin in Ridgewood and Grimm in Brooklyn.
“I’m truly fortunate to have amazing friends in this industry who will always show support in time of need,” said Ralph Perazzo of BBD’s Las Vegas-Beers Burgers Desserts.
The fundraiser will include a buffet, live DJ, beer, wine, soda, a Chinese auction and a 50/50 raffle. Raffle prizes include a two-night stay at Foxwood Casino Resort with dining and spa credit plus other prizes.
Tickets are $75 per person or $700 for a table of 10. Tickets can be purchased here. All proceeds go directly go to the Augusta family.
If you are unable to attend, Augusta’s family have set up a GoFundMe page, which will help with medical costs that has already raised over $4,500 of a $50,000 goal. People wishing to donate can visit here.
This post has been corrected to reflect Augusta still has to undergo treatment.
Lisa Pepper-Byron. Photo from Help Lisa Medulloblastoma Treatment andCare GoFundMe page
A native of Shoreham is in need of help.
Lisa Pepper-Byron, a mother of three young daughters ages 2, 6 and 7, was diagnosed with medulloblastoma, a cancerous tumor that starts in the brain and spreads to the spine, in December 2018.
Earlier last month, members of her family created a GoFundMe page in her name. Pepper-Byron now resides in Concord, North Carolina, along with the majority of her family and was working as a wedding planner before she was diagnosed, and she currently lacks health insurance. Since she has started radiation treatments, she is unable to work and support her family, according to the GoFundMe page.
Jamie Pepper, one of the Shoreham native’s sisters, said her sibling is a giver and tries to be the best role model she can be for her young daughters.
Lisa Pepper-Byron with her three daughters. Photo from Help Lisa Medulloblastoma Treatment andCare GoFundMe page
Pepper-Byron grew up and lived on Long Island for much of her life, graduating from Shoreham-Wading River High School in 2002 and during her high school days worked at Mr. G’s Pizza in Wading River. The mother of three only moved to North Carolina in the past few years.
The GoFundMe campaign has already raised close over $7,300 of the $200,000 goal within a month, with 127 individuals having donated. The is a currently trending campaign on the site.
“Lisa is really overwhelmed with the amount of support she has been receiving,” Pepper-Byron’s sister said. “She is doing her best to remain strong during this
difficult time.”
Pepper-Byron recently underwent surgery to remove two tumors from her brain to try to prevent the cancer from spreading to her spine. After the surgery, she began another round of chemotherapy.
“Our family is very grateful for the amount of love and generous contributions Lisa has been receiving on her GoFundMe campaign,” Pepper said.
All funds collected from the campaign will go for treatments, medications, a reliable vehicle and short-term expenses for her and the family. The family hopes people support the campaign so that Pepper-Byron can undergo her chemotherapy treatments without the worries of all the expenses involved. You can donate to campaign at https://www.gofundme.com/help-lisas-brain-cancer-treatment-and-care or can send contributions to the Pepper Family at 101 Georgia Street NW, Concord, North Carolina, 28025.
Map of 1,4 Dioxane across Long Island by highest level detected within each water district. Photo from Citizens Campaign for the Environment
Many have attributed New York state of having “the champagne of drinking water,” though in recent years concerns over water quality have grown, especially on Long Island.
After toxic chemicals have been found in Long Island’s drinking water, 1,4-dioxane, has been found to be the chief concern on the Island, and currently it is not regulated by the state.
The chemical has been designated by the U.S. Environmental Protection Agency as a likely carcinogen associated with liver and kidney damage after a lifetime of exposure to contaminated drinking water.
Images: The Citizens Campaign for the Environment shares the test results of common products for 1,4-dioxane. From Citizens Campaign for the Environment
In March, 1,4-dioxane was found in private drinking wells of two homes on Oakside Drive in Smithtown where results showed concentrations higher than 1 part per billion, which is the proposed recommendation by the New York State Drinking Water Quality Council in December 2018. It is not a definitive standard, and the state Health Department is expected to propose a water standard for 1,4-dioxane in the near future.
As a result of the uncertainty surrounding the Island’s drinking water, the Suffolk County Department of Health Services, beginning on March 25, sent informational letters and planned on visiting the 29 homes served by the wells along Smithtown’s Landing Avenue, Oakside Drive and Valley Avenue. From there, each homeowner would set up an appointment with the SCDHS and its staff will come and secure water samples from the wells.
Grace Kelly-McGovern, public relations director at SCDHS said as of April 10 every homeowner received a letter regarding the surveys and 15 of the wells at these homes have already been sampled. Three more homeowners have requested samplings, but the department has yet to receive a response from the other 11 homeowners.
According to Kelly-McGovern, once the samples are collected, they will be sent to the Hauppauge SCDHS lab, along with the New York State lab in Wadsworth, and will be tested for 1,4-dioxane and other contaminants. The process should take one to two months. She added it could take several months until homeowners are notified of the results of the samples.
A concern of 1,4-dioxane is that it can’t be removed through conventional treatment methods and involves a complex process of mixing the contaminated water with hydrogen peroxide, treated with ultraviolet light and then gets sent to tanks filled with carbon where the rest of contaminants are filtered out. The Suffolk County Water Authority’s Central Islip treatment system currently has the sole advanced oxidation process system capable of removing 1,4-dioxane on Long Island, though it required state approval to get it.
At a forum in early February, the Long Island Water Conference estimated the cost of treatment systems for close to 200 water wells contaminated by 1,4-dioxane to be at $840 million. Implementing these treatment systems, they said, could lead to higher water rates for homeowners.
The conference coalition asked for additional state aid and for a delay in when they would have to meet the standard.
As the issue for Long Island’s water providers continues, the SCWA board voted to create the first tiered-rate structure in the agency’s history April 1.
The new rate structure took effect the same day and the base drinking water charge for all customers will increase from $1.95 per thousand gallons to $2.028 per thousand gallons.
Images: The Citizens Campaign for the Environment shares the test results of common products for 1,4-dioxane. From Citizens Campaign for the Environment
The new tiered rate will be $2.34 per thousand gallons for all consumption over 78,540 gallons per quarter. Customers will only pay the tiered rate on water above 78,540 gallons per quarter, and the standard rate up until that point.
According to the authority, the action is in accordance with an initiative undertaken by the New York State Department of Environmental Conservation, which established a goal for suppliers of reducing peak season water use by 15 percent by 2021 in order to ensure the sustainability of water resources.
“Conservation rate structures have been adopted all across the country to encourage Americans to adjust their water-use habits for the long-term preservation of available water resources,” Jeffrey Szabo, the SCWA chief executive officer said in a press release. “We expect the new rate structure to help protect ratepayers who are careful in their water use and help provide the continued viability of our aquifer system.”
The 1,4-dioxane chemical has also been found in industrial solvents. A March study released by the Citizens Campaign for the Environment indicates the chemical is present in 65 of 80 household products tested, including baby products, shampoos, detergents and body washes. According to Adrienne Esposito, CCE executive director, the products were tested by the ALS environmental laboratory in Rochester which is certified by the state Department of Health.
The CCE argues that the chemical could end up down the drain and seep into drinking water through septic systems or wells.
Similarly, state Assemblyman Steve Englebright (D-Setauket) has introduced a bill that would ban household products containing 1,4-dioxane in the state except in trace amounts. The bill is currently in committee.
This post has been changed to reflect the accurate location of the SCDHS lab and other lab to be doing the water testing.
Sixth grader Lucas Caruana gets his hair cut. Photo by David Luces
Daniel Mankes of East Northport has his head shaved. Photo by David Luces
Ninth grader John Reina has his hair cut for charity. Photo by David Luces
Ninth grader Ryan Tedesco has his head shaved for charity. Photo by David Luces
Megan Mcvetty smiles as her hair is cut for charity. Photo by David Luces
Young Jack and Charlie Scott get their hair cut. Photo by David Luces
Eric Scott gets his head shaved. Photo by David Luces
Jack Scott, Charlie Scott and Eric Scott all get their heads shaved. Photo by David Luces
Daniel Mankes, Drew Yeager and Glenn Fitze all get their heads shaved. Photo by David Luces
Special education teachers Glenn Fitze and Drew Yeager get their heads shaved. Photo by David Luces
By David Luces
Students, teachers and parents in Commack recently went bald for a cause.
For the 10th year running, members of the Commack School District and surrounding community gathered at the high school March 1 to shave their heads in support of childhood cancer research. Over 100 people participated to raise money for the St. Baldrick’s Foundation, a not-for-profit whose goal is to raise funds to find cures for childhood cancer.
In the past nine years the district has held the event, Commack has raised over $650,000. This year the district raised close to $45,000, with some teams donating well over $10,000.
The annual event is organized by Commack High School teachers Lee Tunick, Bill Scaduto and Dan Revera. Since its inception, close to 1,000 people have shaved their heads in solidarity to those suffering childhood cancer. Hairdressing students from Eastern Suffolk BOCES donated their time to cut the participants hair.
The idea for the fundraiser came about through a cancer awareness club that Revera and Scaduto ran at the high school for quite some time.
“Bill Scaduto and myself have been working in this building for 20 years,” said Revera. At that time St. Baldrick’s didn’t exist as we know it today. When we first found out about St. Baldrick’s, we would go to a school in Northport and a colleague of mine thought why don’t we host our own event here [at the high school].”
Now with the event in its 10th year, Revera said it is great to see Commack School District students and community come out to support this.
“One of the main influx of people [that come here] are the elementary students,” the high school teacher said. “Anything that we can do to generate [money] to help these kids who are going through this is great.” Revera added that the students that came to the event have shown bravery, have stood up for what’s right and are dedicated to a good cause.
“That’s why we are here,” he said. “Just the thought of a family going through something like this and dealing with their child battling cancer — I can’t even imagine. If providing one day where we can support them and try to help however we can, it’s the least we can do.”
Body tissue belonging to James Nielsen, 17, who died in July, could prove helpful for researchers of aggressive, rare form of cancer
James Nielsen, 17, of Port Jefferson Station, while on a family trip in Tennessee to see the solar eclipse in 2017, just weeks before he and his family learned he had cancer. Photo from Steven Nielsen
Making sense of loss is never easy, though a Port Jefferson Station family has drawn strength from their 17-year-old son’s bravery and desire to help others, even in his last days.
“Bad things happen to people and this just happened to happen to me, and we’re just going to do the best we can with it,” James Nielsen told his father Steven when they learned the 17-year-old had been diagnosed with a form of cancer so rare and devastating only one documented case of survival exists.
James Nielsen, 17, of Port Jefferson Station, after becoming an Eagle Scout. Photo from Steven Nielsen
The Comsewogue High School student was diagnosed with NUT midline carcinoma in December 2017, an aggressive form of cancer akin to a death sentence. Despite the devastating prognosis, the Eagle Scout from Troop 454 engaged in rare, barely fleeting moments of despair, according to his parents, even spending the day he died — July 16, 2018 — playing UNO card games and watching the World Cup.
James’ form of cancer is characterized by tumors that form in bones or soft tissue. No effective treatment for NMC exists, there are no guidelines, and current approaches to treatment are based on discussions among a few oncologists who each have had a single experience treating this disease, according to the writings of Dr. Christopher French, a pathologist researching NMC at Dana-Farber/Harvard Cancer Center in Boston, who also advised James’ family after his diagnosis.
“The cancer type that he had is extremely rare and he has a yet even rarer variant of that cancer,” French said in a phone interview. “His tumor was really quite unique. It had a different gene, a variant that is extremely uncommon.”
In late August 2017, upon arriving at cross-country team practice at Comsewogue, James’ mother Jean Nielsen said she noticed a sizable lump on her son’s leg. She said he brushed off her concern, went to practice, and even ran an additional mile when he got home. That night, she had her husband Steven Nielsen examine James’ leg. He said it looked swollen but not necessarily alarming, but when he touched the tumor it was rock solid. A trip that same night to a walk-in medical clinic led to a visit to Stony Brook University Hospital, and by that weekend the family knew their oldest child of four had cancer.
Initially doctors believed he had Ewing’s sarcoma, a diagnosis with a far higher survival rate and clearer treatment options than NMC. In the early stages of his battle, James’ mother said she wrote “treatable and curable” on the first page of a journal the family kept pertaining to his illness. James began what was expected to be a 10-week cycle of chemotherapy, but by the second week of October 2017, it became clear the tumor wasn’t responding to treatment, and immediate surgery would be necessary.
At about 10 p.m. Oct. 12, 2017, just six hours before he was scheduled to head to Manhattan for surgery at Memorial Sloan Kettering Cancer Center, James’ surgeon called and informed his parents there was a possibility he would need to remove their son’s entire leg, and not just portions of the thigh muscle and femur as initially expected.
“I’ll never forget, he looked at us, he sat silent for a moment, and he goes, ‘OK — we’ll do what we have to do,’” James’ father recalled. “And then it was pretty much, ‘Good night.’”
During hour 17 of a 20-hour surgery, the Nielsens were finally informed James would be able to keep his leg.
A positive outlook is often cited as essential in situations like James’, and for the Nielsens positivity flowed on a two-way street.
James Nielsen rides around Manhattan on Thanksgiving night 2017 after undergoing a round of chemotherapy. Photo from Steven Nielsen
“I guess we’ve always just kind of been in the place like, ‘It doesn’t help’ — letting your head spin and certainly getting overwhelmed by emotion — you have to kind of keep everything together for him,” Steven Nielsen said. “He made us so strong. We made him strong, but he led the way.”
Being able to salvage his leg was a small, yet short-lived victory. By December, doctors were finally able to pinpoint his diagnosis. Staring down a cancer with such long odds of survival precipitated an unusual response from the Nielsens — a trip to Disney World.
“We didn’t let it control us, we controlled it,” the father said. Self-pity was never in James’ vernacular. “We were never naive about the possibilities of what could happen, but we also, all of us, really felt that it wasn’t worth putting your energy there. Put energy toward your cure. And so we lived life that way.”
The family dedicated their son’s last months to embracing life, spending Thanksgiving evening perusing Manhattan after an eight-hour round of chemo, looking at stores on Madison Avenue, a night his father remembered as “magical.” They visited a ranch in upstate New York just weeks before his death, one of James’ favorite places to vacation. They went to the beach.
While their focus was getting the most of their time remaining, James’ parents were far from ready to give up the fight. Feeling like their experience at Memorial Sloan Kettering left something to be desired, Steven Nielsen did some research that led him to French. James participated in some clinical trials and spent time at the Boston facility, where he and his father even managed to find time to explore the city and visit colleges with notable pharmacy programs, a field in which James had expressed a future interest.
The father’s dogged pursuit of answers for his son led French to mistakenly call him “doctor” during one of their numerous correspondence.
“He wrote in a way that made me think that he knew quite a bit about medicine, I just assumed he was a physician,” French said, laughing. Both Nielsens are teachers in the Comsewogue district.
French is hoping to soon be provided with donated tissue from James for the purpose of research, one of the teen’s dying wishes. His will be the first cancer cell line, which are living cancer cells used for research, with NMC that French will have been able to get his hands on, an essential gift if there’s any hope for untangling the mysteries of the cancer form.
“The tissue that he donated at his autopsy for research was priceless, and potentially a very valuable tool to perform research with,” French said. “He was just a sweet individual. It tore my heart out when I met him very briefly … It was quite riveting to meet him just sort of knowing the truth, that this was likely to not go well.”
For James the decision to donate tissue for research was reflexive and required about two minutes of thought, according to his parents. The teen was known for reusing Dixie cups and napkins because of his aversion to creating waste.
The Nielsen family goes pumpkin picking shortly before he underwent surgery in Oct. 2017 to remove a tumor from his right leg. Photo from Steven Nielsen
“For him it was just what you do — he didn’t think it was a big deal,” his mother said. “What we look to as heroic or whatever is not really that heroic. Sometimes unassuming people are the most heroic, not people who are very vociferous.”
She said the family can take some comfort in knowing there’s a possibility James’ struggles could lead to a better future for someone else.
“I think if you believe everyone has a purpose, you’d like to think such a horrible result would end with something purposeful, like contributing toward the cure for other people,” the father said. “For us to have him taken away, you hope that that’s the reason.”
The Nielsens expressed gratitude for the support and well wishes they’ve received from the community. Some of James’ classmates have taken up fundraising efforts to get a memorial built in downtown Port Jefferson. Members of the school’s marching band wore pins honoring their fallen peer at the homecoming football game this month. Still, his parents stressed James was not interested in pity or ritualistic gestures of remembrance.
“He was very kind, very sweet, very familial — old kind of qualities that aren’t maybe appreciated as much these days,” his mom said when asked how she hoped he’d be remembered. “He was very selfless.”
To donate to aid in NMC research visit https://www.myjimmyfundpage.org/give/nmcregistryfund.
In Hawaii, numerous small earthquakes caused parts of Big Island to shake. Geologists, who monitor the islands regularly, warned of a pending volcanic eruption. They were right, clearing people away from lava flows.
How did they know?
It’s a combination of history and science. Researchers in the area point to specific signs that are reflections of patterns that have developed in past years. The small earthquakes, like the feel of the ground trembling as a herd of elephants is approaching in the Serengeti, suggest the movement of magma underneath the ground.
Higher volumes of lava flows could come later on, as in 1955 and 1960, say USGS scientists in the archipelago.
The science involves regular monitoring of events, looking for evidence of what’s going on below the surface. “Hopefully we’ll get smart enough that we can see [tremors] coming or at least be able to use that as a proxy for having people on the ground watching these things,” Tina Neal, scientist-in-charge at USGS Hawaiian Volcano Observatory, explained to KHON2 News in Honolulu.
People look for signs in everything they do, hoping to learn from history and to use whatever evidence is
available to make predictions and react accordingly.
Your doctor does it during your annual physical, monitoring your blood chemistry, checking your heart and lungs, and asking basic questions about your lifestyle.
Scientists around Long Island are involved in a broad range of studies. Geneticists, for example, try to see what the sequence of base pairs might mean for you. Their information, like the data the geologists gather in Hawaii, doesn’t indicate exactly what will happen and when, but it can suggest developments that might affect you.
Cancer researchers at Cold Spring Harbor Laboratory and Stony Brook University are using tools like the gene editing system called CRISPR to see how changing the genetic code affects the course of development or the pathway for a disease. Gene editing can help localize the regions responsible for the equivalent of destructive events in our own bodies, showing where they are and what sequences cause progression.
Scientists, often working six or seven days a week, push the frontiers of our ability to make sense of
whatever signs they collect. Once they gather that information, they can use it to help create more accurate diagnoses and to develop therapies that have individualized benefits.
Indeed, not all breast cancers are the same, which means that not all treatments will have the same effect. Some cancers will respond to one type of therapy, while others will barely react to the same treatment.
Fundamental, or basic, research is critical to the understanding of translational challenges like treating
Alzheimer’s patients or curing potentially deadly fungal infections.
Indeed, most scientists who “discover” a treatment will recognize the seminal studies that helped them finish a job started years — and in some cases decades — before they developed cures. Treatments often start long before the clinical stages, when scientists want to know how or why something happens. The pursuit of knowledge for its own sake can lead to unexpected and important benefits.
Outside the realm of medicine, researchers on Long Island are working on areas like understanding the climate and weather, and the effect on energy production.
Numerous scientists at SBU and Brookhaven National Laboratory study the climate, hoping to understand how one of the most problematic parts of predicting the weather — clouds — affects what could happen tomorrow or in the next decade.
The research all these scientists do helps us live longer and better lives, offering us early warnings of
developing possibilities.
Scientists not only interpret what the signs tell us, but can also help us figure out the right signs to study.
It was five years since I had a colonoscopy, so I made an appointment to repeat the procedure. It was not a date on the calendar I was looking forward to. I understand the importance of this test for me, so I did what I had to do. My dad died of intestinal cancer, as did several of his siblings, so the family warning is clear. Had this test been available at the time he was stricken, and his cancer discovered, I have little doubt that my dad, a robust and athletic man, would have otherwise lived a longer life than his 70 years.
A 2015 German study published in the European Journal of Cancer confirmed that colonoscopy screening “will lead to substantial reductions in the colorectal cancer burden.”
So what is a colonoscopy? I write to explain the test in the hopes of encouraging any readers who might be postponing and avoiding that appointment to take care of that little task once they turn 50. It is my understanding that in most cases, health insurance will cover the costs, which in itself is evidence of the importance of the test. And the experience is not so awful. In fact there is, so to speak, a silver lining, but more about that later.
Here are the details. A flexible tube, called a colonoscope, with a video camera on the end that is connected to a large screen in the room, is inserted through the rectum and allows the gastroenterologist to examine the inside of the large intestine. The physician then searches for any abnormalities such as polyps, which can turn into cancer, and usually removes them. The scope rides on a cushion of air that is provided, kind of like a maglev train moves along smoothly without touching the ground through magnetic levitation. The actual procedure takes only about 30-45 minutes, but between the prep at the office and the recovery, it’s a two-to-four hour event.
The first time I had this test, I wanted to be awake to see the inside of the intestine, which is actually quite beautiful. It looks like a braid, as much more surface area can effectively fit into a small area. Tiny red and blue blood vessels crisscross the sides. Of course in order to see all this clearly, the intestine must first be totally cleaned out, which is probably the less pleasant part of the whole deal. Some fasting is involved, anything red, like a tomato, or a seed or nut that might block the view, is to be avoided, and in the last 12 hours before the test, a liquid laxative that spikes 64 ounces of Gatorade is ingested.
I was advised to wear loose and comfortable clothing and to leave cash and jewelry at home. Upon arrival, I was given two of those infamous hospital gowns, one to face front and the other the rear. My clothes were secured in a locker, and after a thorough history was unhurriedly taken, the nurse placed an intravenous (IV) line into my arm.
After my first experience, I chose to be fully sedated this time. I was given the good news, that all was well, when I awoke. As a result of the sedation, however, I could not just get up and drive but needed to be accompanied by a companion. In my case it was my son, who could steer me through the hallway and into the car, then drive me home. Shortly after I arrived back in the kitchen, I realized I was ravenous and began refilling my intestine.
There is a mild bit of bloating after the test as a result of the air that is added, but that is not particularly uncomfortable and disappears within hours. I was advised not to drive a car, operate any machinery or power tools (unlikely), drink any alcoholic beverages or make any important decisions until the following day.
There are other forms of the colonoscopy that are somewhat less invasive, but my understanding is that this variant is the most thorough and therefore the most desirable. As for the silver lining? I did appear to lose a couple of pounds, at least for now.
If homeowners could find insects in their home, confirm that they were termites and locate nests before the termites damaged a house, they’d save themselves numerous problems. The same holds true for cancer.
Using the latest molecular biology techniques, researchers at Cold Spring Harbor Laboratory including Associate Professor Alexander Krasnitz and Professor Michael Wigler have explored ways to detect cancer earlier.
Unlike other scientists, who have created tests that reveal the genetic probability of developing cancer, Krasnitz and Wigler developed a blood test to reveal the presence of a tumor that might be hard to spot. Such a test could be particularly valuable for cancers such as ovarian and pancreatic cancer, which can be inoperable by the time they present clinical symptoms.
Urging what Wigler described as a “call to arms,” Krasnitz said they created a blood test, called copy number variation, that they hope will be economically feasible. In copy number variation, sections of genes are repeated. While healthy cells have copy number variation, cancer cells use them like a Jack Nicholson mantra in “The Shining,” where the repetition of “all work and no play makes Jack a dull boy” becomes a calling card for a killing spree.
In cancer, chromosomes or chromosome arms are duplicated or deleted. Sometimes, a narrow region of the genome undergoes amplification, creating multiple copies of the region. Other times, a region of the genome may be lost. Genome-wide copy number variation is a hallmark of cancer. Copy number variation occurs often amid the disruption of DNA repair mechanisms and the breakdown in the way DNA separates into daughter cells during division.
In a recent article in Trends in Molecular Medicine, Krasnitz, Jude Kendall, Joan Alexander, Dan Levy and Wigler — all scientists at CSHL — suggest the potential for single-cell genomic analysis that searches for the presence of copy number variations could raise the alert level for cancer, signaling the need to search more closely for developing tumors.
In most massive cancers in the population, including breast, ovarian and prostate cancer, copy number variation is “ubiquitous,” Krasnitz said. Screening for these changes could provide “evidence for the presence of something abnormal,” which can be validated through other tests, Krasnitz said.
Copy number variation, on its own, is not sufficient to detect cancer, Krasnitz said. Researchers need evidence of similar abnormal copy number profiles in multiple cells. For this test to have clinical relevance, it would need to minimize false positives, which could create alarm and lead to future tests that might not be warranted, while also avoiding false negatives, which would miss the presence of cancer.
The main sources of false positives could come from copy number variation that’s already in cells in the blood that randomly look like a tumor. Cells with partially degraded DNA can have high copy number variation, which the researchers have observed. These profiles, however, arise from random processes and typically look different from each other. Cells from a cancer clone, however, have similar copy number profile.
Cancers with low copy number variation were a minority among the 11 cancers the scientists studied and include a type of colorectal cancer called microsatellite-unstable. If these CSHL researchers developed a preclinical test, they would look for additional ways to detect such cancers.
While numerous technological innovations required for the test exist, including copy number profiling of single cells and methods to enrich specimens from blood for suspected tumors, Krasnitz explained that considerable work remains before its clinical use, including establishing tumor cell counts in the blood of early patients, making single-cell profiling cheaper and finding optimal ways to identify the tissue of origin.
They are planning to study newly diagnosed patients to observe the presence of circulating cells from tumors. Once the scientists prove that the test has some predictive value, they need to ensure that it is economical and that they can follow up with patients to find tumors.
At this point, it’s unclear what the presence of copy number variation might reveal about the type of tumor, which could be a slowly growing or an aggressive type. Additionally, an abnormal indication from this type of analysis wouldn’t reveal anything about the type of cancer. Further tests, including on RNA, would help direct doctors to a specific organ or system.
Apart from his work with Wigler, Krasnitz also has numerous collaborations, including one with CSHL Cancer Center Director David Tuveson.
In his work with Tuveson, Krasnitz is ensuring that the organoid models Tuveson’s lab creates, which are living replicas of tumors taken from patients, faithfully reflect the genetic make up of the tumors. That, Tuveson said, is a significant undertaking because it can validate the organoid model for exploring the biology of tumors.
“This is a deliverable that many people are waiting for,” Tuveson said. The researchers want to make sure “what we grew is what the patient had in the first place.” So far, Tuveson said, the data looks good and the scientists don’t have any examples of the genetics of the organoids differing from that of the tumor.
Krasnitz also attempts to predict an organoid’s response to drugs that haven’t been tested yet based on the organoid’s reaction to other drugs. Tuveson reached out to Krasnitz to work with his group. He said Krasnitz is “a major player” and is “very skilled” in the type of analysis of big data his group generates through the genome, the transcriptome and drug screens. “He’s able to look at those three types of information and make sense of it,” Tuveson said.
Krasnitz is grateful for the support of the Simons Foundation, the National Institutes of Health and the Breast Cancer Research Foundation for his work with Wigler. The most recent article with Wigler is an “invitation for the [research] community to join in the effort,” Krasnitz said. “We want collaborators and more competition in this area.”
Hundreds attended the Lax Out Cancer fundraiser in Shoreham that benefited four local children battling cancer. Photo by Kevin Redding
Alexa Boucher has attended Shoreham-Wading River’s Lax Out Cancer game for years, and this year, she’s one of the fundraiser’s beneficiaries.
In January, Alexa Boucher was diagnosed with Rhabdomyosarcoma, a cancerous tumor that’s grown on the 14-year-old’s eye socket.
She was chosen as one of four — alongside 6-year-old Grayson from Miller Place, and 1-year-old Hannah Grace and 10-year-old Jackson from Port Jefferson Station — who were honored in the middle of Thomas Cutinella Memorial Field during the ninth annual event May 6.
Alexa Boucher, above with her family, enjoys playing her guitar, basketball and softball. Photo by Kevin Redding
Shoreham-Wading River, Garden City, Miller Place and Bellport participated in three games, with all money raised through donations and raffles divided equally among the recipient’s families.
“I’m overwhelmed,” Alexa said when she arrived on the school grounds to see hundreds of families, volunteers and corporate sponsors rallying behind her. “I never would’ve imagined that I would be a recipient.”
Kimberly Boucher, Alexa’s mother, was equally overwhelmed by the outpouring support for her daughter, who has been undergoing chemotherapy at the Memorial Sloan Kettering Cancer Center in the city.
“We’re just so blessed to live in such an amazing community; there aren’t enough words to say how much we appreciate what’s been done for Alexa,” she said. “You never think it’d be your own child that you’re coming for … we’re just so grateful [that] everybody comes together when they hear a child is sick.”
Larry and Vanessa Horowitz, whose son was diagnosed with Non-Hodgkin lymphoma in February and has been in and out of treatment at Stony Brook Hospital the last few weeks, were grateful to be there with him.
“He’s 6 years old and deserves everything we can give him,” Larry Horowitz said as he watched Grayson, smiling ear-to-ear, pass a lacrosse ball around with his friend. “There’s so much unbelievable selfishness and fundraising and everyone getting together here. The sun is shining and this is what I’ve been praying for.”
Grayson Horowitz tosses around a lacrosse ball. Photo by Kevin Redding
His wife, reflecting on her son’s ability to muscle through his ordeal at such a young age, said, “He’s stronger than I ever imagined and it’s making us all stronger just watching him. … You don’t really know people until you go through something like this, and I have no idea how to thank everybody for doing they they’ve done for us.”
The Shoreham-Wading River-based fundraiser was started in 2008 by Tom Rotanz, the high school’s then varsity lacrosse coach, as a way to acknowledge the father of one his player’s, who succumbed to a rare salivary gland cancer in 2005, as well as others in the community affected by cancer.
Since then, the event narrowed its focus on raising money for the families of kids in Shoreham and neighborhood districts fighting cancer — starting with 10-year-old Liam McGuire, a member of Shoreham’s lacrosse program who has been in remission following a 38-month leukemia battle, and Kaitlyn Suarez, a Shoreham girls’ lacrosse superstar who joined the team after recovering from two bouts with Hodgkin’s lymphoma.
“It’s such an uplifting experience to feel all the love that everybody throws at these kids,” said Miller Place resident Glen Cote, who, along with his wife Renée and young son Zachary, were beneficiaries in 2014 and 2015. In June 2014, Zachary, 5 at the time, was diagnosed with Grade 4 medulloblastoma, or brain cancer.
“To have your child go through something like this, you’re down in the dumps,” the father said. “But this provides the parents and the little ones with a great feeling.”
Before the event even kicked off, $30,000 was raised for the families through sponsors, which included St. Charles Hospital and FLG Lacrosse, and the sale of program ads, T-shirts and raffle tickets.
A DJ from 101.7 FM “The Beach” emceed the fundraiser and That Meetball Place, from Patchogue, supplied food for attendees.
“They’re competitive kids and they want to play the game, but they understand the bigger purpose of giving back to kids that are not as fortunate.”
— Mike Taylor
“Every year it’s grown and grown,” said Kathy Miller, a member of the event committee and mother of a lacrosse player. “It’s teaching the players a valuable lesson about life, how precious life is and how much this giving means for the families. It’s bigger than just a lacrosse game.”
Mike Taylor, head coach of the boys’ varsity lacrosse team who opened the door for other school districts to participate when he was hired three years ago, said the players are a different breed of athletes.
“They understand the true meaning of this,” he said. “They’re competitive kids and they want to play the game, but they understand the bigger purpose of giving back to kids that are not as fortunate as they are. When they were kids seeing this event, they wanted to be part of it on the lacrosse side. Now that they’re older, and they’ve met the kids that they’re helping, it becomes a whole different thing to them.”
Joe Miller, a senior and varsity midfielder for Shoreham-Wading River’s boys’ lacrosse team, said he’s incredibly moved by what the recipients go through.
“It means a lot that we can help them out a little bit,” Miller said. “Seeing the kids and their families here, it makes it a lot more powerful and makes you feel like what you did made a difference.”
Defenseman Kyle Higgins echoed his teammate’s sentiment.
“It’s an honor to play for this kind of event,” he said. “Helping those who need support means a lot to us.”
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