Max Rutter gets the lightbulb lit inside the new science classroom at Andrew Muller Primary School. File Photo by Rebecca Anzel
By Rebecca Anzel
Second-graders in Andrew Muller Primary School’s new science room were beaming with excitement Monday as teachers distributed materials for an experiment — a magnet, paperclip, battery, copper wire, rubber band and lightbulb.
The class was learning about interactions. Debbie Trelfa helped her students name each of the items in front of them and asked them to figure out how to make them interact. One table discovered the magnet attracted the paperclip, and Trelfa told her students there was another interaction they could make.
Andrew Muller Primary School second-grade teacher Debbie Trelfa teaches a new science lesson to her class. Photo by Rebecca Anzel
Students told one another to “persevere,” and a few minutes later another table discovered they could get the lightbulb to light up by placing it on the battery.
Miller Place school district’s two elementary schools, Andrew Muller and Laddie A. Decker Sound Beach School, adapted an available classroom each to be used as science learning and inquiry labs. Students study topics like weather and plants in an interactive way, as opposed to using textbooks.
“Having been a classroom teacher, I loved teaching science, but it’s very difficult to do in a classroom,” Andrew Muller Primary School Principal Laura Gewurz said. “Experimentation can be time consuming and complicated to set up and break down. Having a room designed for student experimentation and collaboration makes science exciting and accessible, and saves instructional time.”
These two spaces were instituted to prepare for new state science and engineering curriculum changes, which shift the focus of lessons from memorizing information presented by teachers to understanding concepts by investigating them. The updated standards are called Next Generation Science Standards, which use “three-dimensional learning.”
Instead of a teacher asking students a question with one correct answer, for example, students would instead consider an open-ended one by using evidence presented by a teacher or reading. Or, instead of students reading a textbook chapter and answering questions on a worksheet, they would read multiple sources and write reports and posters about the ideas.
“You’re seeing a lot more hands-on experiences, hearing a lot more student talk and witnessing more student collaboration.”
—Laura Gewurz
“New York State is really changing the curriculum for science, which I think is fantastic,” Gewurz said. “It has not been changed since 1996, and not only are our concepts about teaching different, the science is different.”
According to a NYS Education Department document, the proposed science learning standards will be presented to the Board of Regents this winter. It is the last step in a process that began in January 2015, when the board counseled the Education Department to begin drafting new standards. Since then, the draft was updated with results from a public survey and discussed in June 2016.
“As teachers, schools, and educational systems systemically transition to the new science standards and changes to local curriculum and instructional practice, a call for coherent professional development opportunities is vital,” the NYS Education Department said in a statement. “To this end, the Department will continue to collaborate with science education stakeholders across the state and nation to assist in building the awareness and the capacity of teachers and leaders of science.”
Miller Place is “way ahead of the game,” Assistant Superintendent Susan Hodun said, in beginning to implement science curriculum changes before the new state standards are finalized and implemented.
With cooperative learning tables for students to work with and learn from each other, separate storage areas for each grade level and science learning resources displayed, the new science labs further encourage modern teaching methods.
Anna Paesano and Kayla Martins perform the day’s experiment. Photo by Rebecca Anzel
“I think it really works with the new science learning standards that New York State has developed in the sense that students have more access to authentic learning,” Gewurz said. “You’re seeing a lot more hands-on experiences, hearing a lot more student talk and witnessing more student collaboration. I think with the changes to science, it’s all coming together, which is great.”
The science room is also financially smart, she added, because instead of purchasing duplicates of materials for each classroom, the school can instead buy a wider range of materials to create a “much richer room.”
Students spend about an hour per week doing experiments that supplement the time they spend in the classroom learning about science concepts. The teachers and principal at Andrew Muller hope that hands-on experience will help their students as they get older.
“If you’re looking at college and career readiness, how would kids even know if they want to be an engineer unless they’ve had the opportunity to experiment,” Gewurz asked. “I think it’s certainly motivational and I think you will see more boys and girls interested in engineering in this country if you start to do things like this.”
St. Charles Hospital nurses and other staff wear pink bracelets as a sign of support for Desiree Bielski-Stoff, who is battling breast cancer. Photo from Bielski-Stoff
By Rebecca Anzel
Registered nurse at St. Charles Hospital in Port Jefferson Desiree Bielski-Stoff knows what a lump feels like — she had a small one removed from her left breast when she was 20. Since then, she performed self-examinations regularly and, coupled with her medical knowledge, thought she was “pretty good” at self-assessment.
In September, Bielski-Stoff, who is now 37, was diagnosed with breast cancer. Less than a month later, she had a double mastectomy at Memorial Sloan Kettering Cancer Center in Manhattan.
Bielski-Stoff waits to enter the operating room before her double mastectomy Oct. 4. Photo from Bielski-Stoff
“I was looking for something like that mass in my left breast, something I could feel,” she said. “It wasn’t like a lighted sign going ‘Bling Bling, you have cancer — you have a mass in your breast,’ and I think that’s what we think we’re supposed to be looking for.”
October is national Breast Cancer Awareness Month, and Bielski-Stoff has been sharing her story with friends and family in the hopes they will not have to go through what she experienced. Every two minutes, a woman in the U.S. is diagnosed with breast cancer, a disease that kills more than 40,000 women each year, according to Right at Home, a senior care organization.
On average, women develop breast cancer at age 61. Bielski-Stoff’s diagnosis rattled her family, friends and coworkers. She has worked at the hospital since 2004.
“It’s eye-opening for all of us — I’m her age, you know? You never know,” Kim Audiino, an emergency room nurse at St. Charles Hospital and friend of Bielski-Stoff, said. “I think people need to open their eyes and be more alert about checking themselves.”
Bielski-Stoff was getting dressed after taking a shower in August when out of the corner of her eye, she noticed her right breast collapsed when she lifted her arm. Her first thought, she said, was that it was due to the 10 pounds she recently lost for her sister’s upcoming wedding. Bielski-Stoff conducted a brief self-exam, finding nothing out of the ordinary — nothing was swollen and she did not feel any lumps.
She showed her gynecologist that Wednesday. Bielski-Stoff said the doctor cocked her head, commented that it looked like a dimple and gave her a script for a mammogram and an ultrasound. The doctor told her it was probably nothing but she wanted to be on the safe side.
Her appointment was Sept. 7 at St. Charles with Dr. Jane Marie Testa, a doctor her coworkers recommended after Bielski-Stoff insisted she wanted to see the best. George, her husband, had asked if she wanted him to go with her, but she said no — she did not want to make it a big deal.
“I remember driving there and pulling up in the parking lot and thinking, either this is going to go in a good way or it’s not,” Bielski-Stoff said, “like, this could be the last time I feel normal.”
The tests took a few hours. When they were over, Testa came in and said she wanted to show Bielski-Stoff a few things with the ultrasound. There was a spot on her left breast the doctor wanted to take a sample of, and one on her right. Then Testa hovered over another spot on her right breast and said she was sorry — it was cancer.
There was no question about what it was, Bielski-Stoff said. It was a classic presentation of a cancerous mass. It was irregularly shaped and had vascularity and calcifications. Questions were flying through her mind about whether her life was over, if she would be in pain and if she was going to be okay, she said.
“The feeling that comes over you when somebody says cancer is just, I started crying,” Bielski-Stoff said. “I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”
Her sister’s wedding was that weekend, so she booked the biopsies for the following Wednesday. Then she set about trying to find a surgeon.
Bielski-Stoff’s insurance company told her there was only one in network near her, so she turned to her coworkers at St. Charles for advice. With the help of her supervisor and the head of human resources, Bielski-Stoff learned the doctors at Memorial Sloan Kettering were covered.
The surgeon gave her two options: either Bielski-Stoff could get a lumpectomy with radiation or she could get a mastectomy. She opted for a double mastectomy.
“I have to live with this. This is what I can live with,” she said about her decision. “I’m young, 37. I can’t spend the rest of my life panicking that I’m getting cancer again.”
“The feeling that comes over you when somebody says cancer is just, I started crying. I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”
— Desiree Bielski-Stoff
Her surgery was Oct. 3. Two weeks later, all the drains were out and she was sore but doing well. The support from her friends at St. Charles helped her through the experience, she said. They visited her every day, bringing her flowers and food, watching movies with her, checking her dressings, helping her bathe and delivering her medicine from the pharmacy.
“We were pretty much her nanny 24/7 while her husband was working,” Audiino said. “She was never alone, and she had more care than anyone I’ve seen because she’s so well-known and well-liked. We love her to pieces.”
Audiino and another friend, Colleen Miller, raised just about $600 selling over 150 pink bracelets around the hospital. Her Facebook page is littered with pictures of coworkers wearing their bracelets — some say Faith, others say Hope and Survivor. The funds paid for the hotel room Bielski-Stoff’s husband stayed in the night before her surgery.
St. Charles is letting employees donate their vacation time to Bielski-Stoff. She has exhausted hers between her cancer experience and working on the hospital’s negotiating team.
“All of us at St. Charles wish Desiree the best of health — I am very proud of our staff for supporting Desiree during this difficult time,” Jim O’Connor, executive vice president and chief administrative officer at St. Charles, said in an email. “Their gesture also brings awareness to this important health issue and the need for screening and early detection.”
Others have been doing what they can to show their support as well. A former patient’s family drove to her house from the North Shore to drop off supermarket gift cards, and her sister set up a GoFundMe account.
Bielski-Stoff said this experience has been traumatic because it feels like she does not just have cancer, but all her friends and family do. Her diagnosis has made the people around her aware of the importance of conducting self-examinations and going to a doctor regularly.
“It made me have a different look on life and it definitely opened my eyes to making sure that I take care of myself and my children, and that all of my friends keep up with checking for themselves,” Miller, a nursing assistant at St. Charles, said. “In the meantime, we all have to be ‘Dezzy strong,’ as I call it, and be there for her while she’s recovering.”
Bielski-Stoff found out on Halloween she’ll need four months of chemotherapy.
“That’s going to change me as well and make the fight a little bit harder,” she said.
Bielski-Stoff’s friend Jimmy Bonacasa is hosting a fundraiser for her at the Harbor Crab in Patchogue Sunday, Nov. 13, from 4 to 8 p.m. There is a suggested donation of $20.
This version was updated Nov. 1 to include Bielski-Stoff’s treatment plan.
The Shoppes in Wading River is designed to resemble the square of a small town. Photo by Rebecca Anzel
By Rebecca Anzel
East Wind owner Kenn Barra talks at the grand opening. Photo by Rebecca Anzel
East Wind in Wading River hosted a grand opening celebration Oct. 28 through 31 to celebrate its latest expansion — The Shoppes. It features 28 locally owned stores, eateries and a carousel.
East Wind owner Kenn Barra evolved the 26-acre property over the past 25 years — he started with a pizza place and added a venue for small weddings and parties, a 50-room inn and Long Island’s largest grand ballroom. He said the new addition of The Shoppes will create more local jobs, help the local economy and hopefully serve as an attraction for residents and travelers from all over Long Island.
“My vision was to create a destination where the local community and guests from The Inn will come and enjoy meeting shop owners and exploring and buying what they have to offer,” Barra said. “Giving local business people the opportunity to develop and grow is rewarding to me.”
The Shoppes are designed to resemble the square of a small town, with freestanding stores connected by a brick walkway. Every couple of feet are wooden benches and adirondack chairs. An indoor pavilion houses a carousel with hand-made horses and figures. East Wind also features 28 specialty retail and boutique shops, an ice cream parlor and a pizza place, all chosen by Barra.
“This is a totally different concept — this is a very ma-and-pa situation,” he said. “I’ve seen people now that I haven’t seen in three years, five years, 10 years strolling along, having a cup of coffee. Neighbors are meeting neighbors.”
A central square at The Shoppes in Wading River. Photo by Rebecca Anzel
Stores include The Crushed Olive, The Painted Canvas, North Fork Bridal, Little Miss Sew It All and Solntse Hot Yoga. Barra said about 70 percent of the spaces are currently occupied.
“The grand opening of The Shoppes at East Wind will usher in a new, welcoming family friendly destination on the eastern end of Long Island,” County Executive Steve Bellone said in an email. “I congratulate owner Ken Barra of East Wind Hotel and Spa for creating this addition of The Shoppes at East Wind. It will become a destination for local residents and tourists, and a year-round venue for local merchants and artisans to market Suffolk County-made items.”
Barra was presented with proclamations from the office of Town of Riverhead Supervisor Sean Walter (R), County Executive Steve Bellone (D), Congressman Lee Zeldin (R-Shirley) and Assemblyman Anthony Palumbo (R-New Suffolk) at the ribbon-cutting ceremony on Oct. 28.
The Shoppes plans to host programs and activities throughout the year, such as a Christmas tree lighting and an Easter egg hunt. Fall and Halloween events were scheduled during the grand opening Oct. 28-31.
Samantha Carroll and Jeremy Hudson sing ‘Follow Your Heart’ in a scene from ‘Urinetown.’ Photo courtesy of the SCPA
By Rebecca Anzel
“Urinetown: The Musical,” currently in production at the Smithtown Performing Arts Center through Nov. 6, has received rave reviews. The two lead characters, Hope Cladwell and Bobby Strong, are played by real-life couple Samantha Carroll and Jeremy Hudson. I sat down with the two actors on Saturday night before the show to ask them about their latest roles.
Samantha Carroll and Jeremy Hudson sing ‘Follow Your Heart’ in a scene from ‘Urinetown The Musical.’ Photo courtesy of SCPA
How did you two meet?
S: The first time we actually met was here at Smithtown Theater years ago when we both auditioned for Light in the Piazza, which was my first show. Jeremy didn’t make the cut but we read together on stage and I remembered it and I found him on Facebook—
J: She Facebook stalked me throughout college.
S: I just was like, “I read with this guy and he’s nice.” We became closer friends at the Engeman. We started doing children’s theater there together and he was in a production of White Christmas that I was a dresser.
J: Even before that though — Little Women.
S: Oh god yeah, and then we did Little Women together at CM. Our friendship and love, eventually, has come through working at all these different theaters. But we did actually meet at the Smithtown Center for the Performing Arts years ago. And here we are.
J: It was a long time ago. 2007.
What is it like being engaged to each other and starring opposite each other in a show?
S: I mean, it’s like any other day really. We met doing shows together so I guess it’s normal. It’s easier to learn the lines. I trust him on stage. Our families are even more excited than we are.
J: Yeah, it’s a fun opportunity that’s few and far between. It’s a chance to have both of our lives kind of converge at one point to be able to do a show like this together. We try and make the most of the time we have doing this show because —
S: We don’t know when it’ll come again to work together, so it’s very nice.
Photo courtesy of SCPA Samantha Carroll and Jeremy Hudson in a scene from ‘Urinetown The Musical.’ Photo courtesy of SCPA
What other theaters have you both worked in?
S: Together, we worked at CM Performing Arts Center in Oakdale and the John W. Engeman in Northport. This is definitely our biggest roles together. Playing opposite each other is really, it’s silly but we’re both serious enough that we don’t just burst out laughing.
J: We can keep it together for five minutes.
You said that you performed at this theater in a teen production. Have you done any other shows here?
S: I have. I’ve been here my whole theater life. I’ve done many of the Wonderettes shows — they’re doing another Wonderettes coming this May and June. Light in the Piazza was my first really big one. Most recently, I’ve been in Violet, which was a really big favorite, and we were both actually in First Date together a few months ago as well.
J: Last March. More than a few months at this point.
S: But yeah, I was in Little Mermaid. The list goes on and on. And Jeremy’s worked here before as well.
J: I haven’t done quite as much but I have done a few shows in the past. I did Assassins here, I did Dirty Rotten Scoundrels. Bloody Bloody Andrew Jackson was another one I did here.
How old were you each when you decided that you wanted to be an actor? What attracted you to the profession?
S: I think I was probably about 6 or 7 when I started to be interested in it. My mom took me to see Beauty and the Beast on Broadway and at that point I was like, “Oh, well I have to be Belle.” I mean, I’m still waiting. I think my first acting class was probably at 8 years old and then I started singing lessons in sixth grade, so once I got to high school, I realized that this is what I want to do for the rest of my life. Beauty and the Beast, those princesses and those villains, inspired me to be where I am.
J: And I was in high school, I guess. My brother — my older brother, 10 years my senior so much older brother — used to do theater and growing up I would always go with my parents to see him do shows pretty consistently, so it was always kind of a part of my life. And then I did one myself and I was like, “Hey this is fun.” My first show was Grease, and then Guys and Dolls. I just enjoyed doing it, and having been a part of it my entire life, I just kind of slid into it myself.
Samantha Carroll in a scene from ‘Urinetown The Musical,” Photo courtesy of SCPA
Do you ever get nervous on stage?
S: For sure. Nerves are good, though, because it means you care about it and it keeps you focused.
J: The thing is, I forget there are audiences there, so I just am doing it and because I’ve done it so many times now, I’m used to people watching me do whatever. The only time I get more nervous, so to speak, is if I start to really think about it. Sometimes I’ll be on stage doing a scene and, not to say I won’t be in the moment, but I’ll just think, “I’m standing on a stage and there are people staring at me.” And then at that point what I’m doing starts to sink in, and then maybe at that point.
S: We don’t stay up at night thinking how terrifying it is to be on stage, or we wouldn’t do it. I think we get just general butterflies, especially when your parents are in the audience. You just want to be good. We’re perfectionists, unfortunately, to a fault.
What is it like watching each other perform?
S: It’s so cool. I do some stuff in Millbrook Playhouse in Pennsylvania, and Jeremy has come out to to see me in everything. I always just wait to hear what he has to say, because those mean the most to me. His words and his critiques, he doesn’t have many.
J: Not to her face at least.
S: And seeing Jeremy is amazing too. I got to see him in 1776 last year.
J: You don’t get to see me do as much as I see you.
S: He sees me a little more because he works a big-boy job too.
J: One of the many reasons we’re going to get married is just because it’s nice to share similar interests in this because it is a very time-consuming, very all-encompassing profession job. Being an actor or actress takes a lot out of you, so to be on the same page and to have that point of reference or common ground, so to speak, between the two of us is good.
What is it like when you get a standing ovation?
S: It’s not expected, but it’s very nice when it happens.
J: It’s good that an audience is that invested because it takes a lot to sit through a show, even a show you like, and then feel the need to stand up and show your appreciation for it afterwards means a lot.
Jeremy Hudson and cast in a scene from ‘Urinetown The Musical.’ Photo courtesy of SCPA
Has anything strange ever happened out in the audience that you noticed while on stage?
J: All the time. People on their cell phones, people falling asleep.
S: Snoring!
J: People eating.
S: Choking. We’ve done so much children’s theater together, the kids are, you know, they just scream the whole time. We’ve seen it all.
J: Audiences feel like because they’re sitting in a dark theater that people don’t see them. But lo and behold, being on stage you see everyone and everything. I look out and scan the audience every once in awhile. If you’re doing something weird, I will see you, and we will be talking about you. Being an audience member requires just as much investment as being a performer on the stage. It’s why I don’t like sitting in the front row myself because I feel like I’m a part of the performance as well, because the actors can see you. They can see you throughout the show.
S: And they will look at you. It’s actually easy to see the front row, but a lot of other rows are harder to see. It depends on the cues, but you can always see the first row.
J: Always.
What is your dream role?
S: Currently — they change all the time — I would love to be Alice in Bright Star who was played by Carmen Cusack on Broadway. And I would die and go to heaven to be anything in Waitress.
J: I mean, who doesn’t want to be in Le Mis, but I would like to play Jean Valjean in Les Misérables again. I did it in a teen production ten years ago, so I would like to do that again in a real production. That would be fun.
Do you have theaters in mind that you want to work in?
J: Anything between 7th and 8th Avenues between 42nd and 49th Street would be great.
S: Any theater that’s going to be professional and lovely, we would love to work at.
What attracted you to “Urinetown the Musical”? What made you want to audition?
S: I actually did “Urinetown” at the same theater 10 years ago in the teen production and I played Hope — the same part. I found out they were doing it again and Ken [Washington], the director, had talked to me about if I would like to reprise my role but on the main stage. I said absolutely. It’s a strange show, but it’s very funny and I like to be Hope so I wanted to do it again.
J: I saw the actual show 10 years ago and I have always liked it and wanted to be a part of it. It’s always been on my short list of shows to do, so I’m glad I’ve gotten the opportunity to do it at this point.
What is it like working with the director?
S: I have worked with Ken since I was 16 years old and he has seen me grow up. He is still the fun, grumpy man I remember he was, but you know, I think Ken has such a passion for theater. It’s definitely rubbed off in a good way. We love Ken.
J: He cares a great deal and he has a wealth of knowledge as far as theater goes, so it’s definitely something that is good to tap in to from time to time.
What is it like working with the cast?
S: Well, this cast specifically is a lot of, as we like to say, Long Island notables, just people who have kind of been doing this for such a long time. We’re very luck, honestly. A lot of big personalities, but in a really great way.
J: It’s a very eclectic group of people. All bring individual strengths [to the stage].
What is your favorite scene and song in the show?
S: My favorite scene and song is definitely “Follow Your Heart.” I’ve always loved it. “Be still, Hear it beating, It’s leading you, Follow your heart” was actually my yearbook quote for high school. It’s funny, it’s heartfelt and I get to do it with the best partner in the world.
J: I enjoy the scene leading up to “Run Freedom Run!” and that song. It’s just fun because it’s a bunch of strange people and it’s just very funny. It’s 80 percent the same every night and 20 percent slightly different, which always keeps things interesting.
Michael Newman and Samantha Carroll in a scene from ‘Urinetown The Musical.’ Photo from SCPA
Why should people come see the show?
S: If you ask any theater person at all, they’ll say to you, “‘Urinetown’ is the best,” or, “I love ‘Urinetown’.” I’ve been in it three times. It’s just one that people who don’t usually come to see theater don’t always come to, but they really should because it’s very, very funny. Hilarity ensues.
J: It’s just such an original piece of theater. The show came out in the early 2000s but it’s still very timely in terms of the current climate with politics. It has a lot of good things to say. The music is very catchy, and it’s one of those shows where you hear the name and you’re like, “I don’t know — it sounds weird,” but then you actually go to sit down and you see it and within 15, 20 minutes you’re like, “Wow, I’m glad I didn’t miss the opportunity to see this!”
What is up next for both of you?
S: I am very shortly starting Mary Poppins at the John W. Engeman. I’m in the ensemble but I’m covering a few different tracks of a lot of the character roles. I’m going to be doing that the whole Christmas season. And Jeremy will get one soon, but he’s—
J: Currently in between things. I have to, what with work and whatnot, I have to be a little more selective in what—
S: So he can make the dollar bills. It’s honestly either just you’re doing three shows at a time, one after the other, or you don’t do something for six months.
J: As long as we can make a living, or any wage, really, performing, that is the ideal. I would love to do theater but that doesn’t necessarily mean that’s the only thing I would like to do.
S: But we’ll always do it, regardless of if we have babies or have full-time jobs, we’ll definitely always come back and do theater because that’s what we love.
Is there anything else that you want to say to our readers?
J: This is a wonderful show, here, and Smithtown Performing Arts Center. There is a theater in Smithtown, it’s on Main Street.
S: Please come see Urinetown and everything else because everything they do here is really wonderful.
J: They put a lot of time and effort and thought into shows here. This is specifically a show that desperately needs an audience to enjoy it for it to really reach it’s maximum potential, so come on down everyone.
Brookhaven Town Councilwoman Jane Bonner speaks at the Organ Donor Enrollment Day kickoff event at Stony Brook University Hospital Oct. 6. Photo from Bonner’s office
By Rebecca Anzel
Registered organ donors are hard to come by in New York state compared to the rest of the United States, and for one elected official in Brookhaven, that’s not going to cut it.
Brookhaven Councilwoman Jane Bonner (C-Rocky Point) did not hesitate when her friend Tom D’Antonio said he needed a kidney. She decided right then, at the Huntington Lighthouse Music Festival in Huntington Harbor in September 2015, that she would share her spare.
She underwent comprehensive medical testing at the end of the next month to determine if she would be a viable donor — a blood test, chest X-ray, electrocardiogram, CT scan, MRI, psychological evaluation and cancer screening, to name a few.
“It’s the ultimate physical you’re ever going to have, and by the blood test alone several people were disqualified,” Bonner said. “For once in my life, it turned out that I was No. 1. And it worked out really, really well.”
Brookhaven Town Councilwoman Jane Bonner and her friend Tom D’Antonio after their surgeries to transplant her kidney into his body in April. Photo from Jane Bonner
The surgery was April 26, a Tuesday, at New York Presbyterian Hospital. Bonnor was home that Friday and missed only eight days of work. She said she just had her six-month checkup and she is in good health.
“Jane didn’t just save my life, she saved my family’s life,” D’Antonio said. “Donating an organ doesn’t just affect the person getting the organ — although certainly it affects them the most — it affects everyone’s life.”
Bonner said she takes every opportunity to share her story to bring awareness about the importance of being an organ donor.
“I want to be a living example to show that it can be done because it’s life changing for the recipient and only a little inconvenient for the donor,” she said.
There is a large need for organs in New York. More than 9,700 people are on the organ waiting list, and someone dies every 18 hours waiting for one, according to LiveOnNY, a federally designated organ procurement organization.
New York ranks last among the 50 states in percent of residents registered as organ donors, despite surveys showing 92 percent of New Yorkers support organ donation. Only 27 percent of New Yorkers are enrolled in the state registry, versus the average of 50 percent registered across the rest of the country.
Stony Brook Medicine and Stony Brook University hosted the Organ Donor Enrollment Day event Oct. 6, including Bonner, in a statewide effort to boost the number of registered organ donors.
“Our residents need to be reminded about the importance of organ donation,” Suffolk County Executive Steve Bellone (D) said in a statement. “Along with stressing how one organ and tissue donor can save multiple lives, understanding and debunking the social and religious myths about organ donation are also critical to turning the tides in New York as we currently rank last in registered organ donors in the nation.”
Dawn Francisquini, transplant senior specialist for the hospital, said volunteers enrolled 571 people.
“New York has a very large population, so it’s going to take a lot to get us up to where the other states are,” she said. “But we’re making progress.”
There are two ways to become an organ donor. One is to be a living donor, like Bonner. A potential donor does not have to know someone in need of an organ to donate a kidney, lobe of liver, lung or part of a lung, part of the pancreas or part of an intestine.
“I’ve been able to accomplish really amazing things, but this is a step above that. Satisfying is not even the word to describe it.”
— Jane Bonner
“Living donation is so important because not only are you giving an organ to someone, so you’ve saved that life, but you’ve also made room on the list,” Francisquini said. “So you’ve saved two lives by donating one organ.”
The most common way is by registering when filling out a driver’s license registration or renewal form to be considered as a candidate upon death. According to the U.S. Department of Health & Human Services, though, only about three in 1,000 deceased people are suitable for organ donations.
Doctors determine whether organs like kidneys, livers, bones, skin and intestines are medically viable for a waiting recipient and they typically go to patients in the same state as the donor.
Gov. Andrew Cuomo (D) signed legislation Aug. 18 allowing 16 and 17-year-olds to register as organ donors. If they die before turning 18, parents or guardians are able to reverse the decision.
“By authorizing 16 and 17-year-olds to make the selfless decision to become an organ donor, we take another significant step to grow the state’s Donate Life registry and create opportunities to save lives,” Cuomo said in a statement.
Francisquini said she thinks this new law will make a big difference. Previously, because those under-18 were not allowed to express their wishes when filling out a driver’s license form, many would not register as donors until years later when renewing their license.
Since her surgery, Bonner has shared her story in speeches, panel discussions and on social media using the hashtag #ShareTheSpare.
“I really feel like this is much better than anything I could accomplish in my professional career,” she said. “Through the support of the people that keep electing me, I’ve been able to accomplish really amazing things, but this is a step above that. Satisfying is not even the word to describe it.”
Jennifer Portnoy and her son Javier cut the ribbon. Photo from Stony Brook University Hospital
By Rebecca Anzel
When Jennifer Portnoy of Stony Brook was given her son’s diagnosis, the doctors told her that there was nothing she could do but love him and enjoy her time with him. Javier, she was told, had a rapidly progressive form of Duchenne Muscular Dystrophy, an incurable genetic disorder most prevalent in boys.
“I’m not the type of person that finds that an acceptable treatment plan,” she said. “I needed to get to work to try and create a different outcome.”
“My son is either a part of the last generation to die of the disease or the first generation to survive it.”
—Jennifer Portnoy
Portnoy co-founded Hope for Javier Inc. a few months later as a not-for-profit organization to help fund research that might lead to an effective treatment or cure. Her family travelled to Cincinnati for doctors’ appointments and medical treatments.
Along the way, she met other families in the New York-area who did not have the job flexibility or financial resources to travel for out-of-state care. Portnoy said she realized that with Hope for Javier’s size, it could have an “enormous impact” by addressing that disparity in access to health care.
After researching other area hospitals, Portnoy and Hope for Javier formed a partnership with Stony Brook Children’s Hospital to create the first DMD Center in the tri-state area. The center opened Oct. 5 after a $600,000 donation from Hope for Javier.
“As an academic medical center, we will be able to identify clinical trials as we continue to fight this disease, and your support gives patients and families hope, and it will enable our clinical leadership to provide a level of research, care and support that is unrivaled in the region,” Samuel Stanley, Stony Brook University president, said in a public comment to Portnoy at the center’s ribbon-cutting ceremony.
He added that the center will be a “destination” for residents of the tri-state area, and according to a Stony Brook University Hospital press release, the new center is the only one of its kind between Boston, Massachusetts and Baltimore, Maryland.
“This new program extends our geographic reach and continues our development as a regional healthcare provider of choice for thousands of patients and their families across the tri-state region,” L. Reuven Pasternak, SBUH CEO, wrote in a blog post.
Boys with DMD do not have a protein called dystrophin, which keeps muscle cells in one piece. Muscle weakness usually begins before age 5, showing first in their upper arms and legs. DMD can also affect a patient’s throat, brain, stomach, spine and chest muscles.
It affects about 1 in 5,000 boys in the United States, according to a hospital press release. DMD used to kill boys not long after their teen years, but with modern medicine, patients usually live into their early 30s, according to the Muscular Dystrophy Association’s website.
“This will be a comprehensive center, including pediatric specialists from neurology, cardiology, pulmonary medicine, gastroenterology [and] orthopedics” to name a few, Margaret McGovern, physician-in-chief of Stony Brook Children’s Hospital, said at the new center’s ribbon-cutting ceremony.
Studies have shown that access to this sort of multidisciplinary care adds an average of 10 years to the life expectancy of a boy with DMD, Portnoy said, and with the research being conducted on the disease, those 10 years are of the utmost importance.
“We’re at this tipping point, where ten years is the difference between being here when a cure is found and not,” she said. “My son is either a part of the last generation to die of the disease or the first generation to survive it.”
Stony Brook Children’s Hospital is Suffolk County’s only children’s hospital and has more than 160 pediatric doctors in over 30 specialties. It is set to occupy 10 floors of Stony Brook’s new Medical Center Hospital Pavilion, set to open in 2018, next to the main university hospital.
New standards will require school districts in New York state to test for lead in water. File photo
By Rebecca Anzel
Drinking water in public schools across the state will soon conclude testing for lead contamination. Legislation signed by Gov. Andrew Cuomo (D) in September makes New York the first state to mandate such testing.
The law established a level of lead allowed in drinking water, initial and future testing requirements for schools and deadlines for notifying parents and staff of results.
“These rigorous new protections for New York’s children include the toughest lead contamination testing standards in the nation and provide clear guidance to schools on when and how they should test their water,” Cuomo said in a press release.
Schools are more likely to have raised lead levels because intermittent use of water causes extended water contact with plumbing fixtures. Those installed before 1986, when federal laws were passed to restrict the amount of lead allowed in materials, might have a higher amount of lead.
“We know how harmful lead can be to the health and well-being of young children, and that’s why the Senate insisted on testing school water for lead,” state Senate Majority Leader John Flanagan (R-East Northport) said in a statement. “As a result, New York becomes the first state in the nation to perform this testing and protect millions of its students from potential health risks.”
Lead consumption by children is especially harmful because behavioral and physical effects, such as brain damage and reduced IQ, happen at lower levels of exposure, according to the federal Environmental Protection Agency. Even low levels of lead exposure can cause hearing loss, nervous system damage and learning disabilities.
“We know how harmful lead can be to the health and well-being of young children, and that’s why the Senate insisted on testing school water for lead.”
—John Flanagan
In adults, lead can cause damage to the reproductive system, kidneys and cardiovascular system.
The new law required schools teaching children in prekindergarten through fifth grade to test drinking water by Sept. 30 and schools with children from grades six through 12 to complete testing by the end of October.
This affects in excess of 700 school districts and 37 BOCES locations in the state, consisting of more than 5,000 school buildings, according to the state. Private schools are exempt from this testing.
Any lead level exceeding 15 micrograms per liter must be reported by the school to the local health department within one business day. Schools are also mandated to share the test results with parents and staff in writing and to publish a list of lead-free buildings on their websites.
Glenn Neuschwender, president of Enviroscience Consultants, a Ronkonkoma-based environmental consulting firm, said to a certain extent, these deadlines are a challenge, especially those pertaining to the test results.
“I’ve been speaking to the county health department — they’re currently not prepared to receive that data,” Neuschwender said in a phone interview. “The same would go for the state Department of Health. They’re not currently prepared to start receiving data yet, but they’ve told me that they will be within the coming weeks.”
The cost of a lead analysis ranges from $20 to $75 per sample and must be conducted by a laboratory approved by the Environmental Laboratory Approval Program. Long Island Analytical Laboratories in Holbrook and Pace Analytical Services in Melville are two approved labs, according to the state Department of Health.
If the level of lead in a sample exceeds what the law allows, the school is required to prohibit the use of that faucet until further testing shows the issue is rectified. The law also requires schools to conduct testing every five years.
“The law is certainly, I would say, a work in progress,” Neuschwender said. “The law is very short in discussing remediation — it’s more specific to sampling and action-level objectives — so we expect to see some clarification on the remediation side of things as the law is revised.”
Port Jefferson school district conducted voluntary testing of fixtures throughout the district this summer before Cuomo signed the law, and found small amounts of lead in nine locations. All nine fixtures have been replaced, according to Fred Koelbel, district plant facilities administrator.
Participants at the SASI Family Fun Day held last month in Huntington. Photo by Rebecca Anzel
By Rebecca Anzel
A young scientist at Stony Brook University has received a $2.3 million grant to fund research he hopes will eventually lead to new therapies for the treatment of autism spectrum disorder.
Matthew Lerner, Ph.D., is an assistant professor of clinical psychology at Stony Brook University, and director of the Stony Brook Social Competence and Treatment Lab, the focus of which is learning to understand how children and teens with ASD form friendships.
“We use the word lab loosely, only because we collect data there,” he said. “It’s a fun space with games and activities for kids.”
“Matthew Lerner is sort of a pioneer in his thought process, and that’s what makes him special to me.”
— Priscilla Arena
His work thus far has ranged from lab-based studies — evaluating and developing tools to measure what is happening during social interactions and how the brain processes those interactions — to real-world applications. Lerner’s previous studies ask how, when and if kids make friends, and what helps them do so.
Efforts to link these two levels of analysis have never been done simultaneously — until now. Lerner won a highly competitive National Institute of Mental Health award to fund his innovative approach to studying social behaviors of children with ASD.
“It’s kind of remarkable that it really hasn’t been done in quite this way before,” he said. “We presume that these things — lab-based measures of how kids think about social interactions and real world interactions themselves — are linked, because otherwise, why would we look at them? But how they’re linked, and importantly, how we can understand how those links differ across individuals, hasn’t really been done thoroughly before.”
Priscilla Arena, the leader of a support group for parents of children with ASD, said Lerner is excited about the potential the grant gives his research.
“Matthew Lerner is sort of a pioneer in his thought process, and that’s what makes him special to me,” she said. “He sees potential in the future.”
It’s not far from her initial reaction after meeting with the Stony Brook researcher, who asked permission to speak to the parents in her group.
The Suffolk Aspergers/Autism Support and Information co-founder wanted to protect the parents, who have “already been beaten and kicked” by others looking for monetary donations and permission to study their children. But when she met Lerner, she said she knew almost immediately that he was different.
“He’s sincere, honorable, impassioned, smart and cerebral,” Arena said. “I don’t think my first impression of him has ever changed, and I think that’s why, from the get-go, I’ve had respect for him.”
The award, called Biobehavioral Research Awards for Innovative New Scientists, was created in 2009 as a way to provide younger scientists with financial support for research. It is for early-stage investigators who are on a tenure track and have no prior research project grants.
“BRAINS” is earmarked for “the most promising early investigators” and is “one of the most competitive [awards]” NIH offers, according to Lisa Gilotty, Ph.D., program officer of Lerner’s grant. Gilotty is also the chief of NIMH’s research program on autism spectrum disorder.
Matthew Lerner is enthusiastic about finding treatments for those with autism spectrum disorder. Photo from Matthew Lerner
Lerner is examining how well various biological and social factors, both independently and jointly, can predict how teenagers aged 11 to 17, with and without ASD, socially interact outside of a laboratory. In the five-year project, he and his team are also studying how those factors correlate, and which best explain the resulting social behaviors.
They are hoping to use information gleaned by observing the teenagers inside and outside the lab to make precise predictions about how they make friendships.
Depending on the results, the team might be able to develop generalized patterns that can be applied to a large number of people on the spectrum and be used to create more targeted therapies.
“This is an extremely important study that will shed light on the wide variability observed in social function in ASD,” said James McPartland, director of the Yale Developmental Disabilities Clinic. “Presently, little is understood about the biological reasons for these individual differences. Dr. Lerner’s study will help us understand these differences from both behavioral and brain-based perspectives.”
Dozens of the 260 teenagers — 160 with ASD and 100 without — participating in this study are Three Village students. Lerner and his team have also connected with special educators in the area to see how participants are doing outside the lab in a classroom.
He and his team spend a lot of time in the community, at family events and meetings with parents and educators to introduce themselves, share information about their work and to learn what challenges children are experiencing. Because Lerner wants the work he does to matter to parents and community members, he calls them “stakeholders” in his research.
“The most impressive thing about him is how community-minded he is,” President and Executive Director of Asperger Syndrome and High Functioning Autism Association (AHA) Patricia Schissel said. “It is important that he’s not stuck in a lab. He’s excited to get out into the research community.”
Arena said quite a few study participants are from SASI as well — her son included. Besides hosting support groups, the program, which was co-founded by Arena with Stephanie Mendelson, provides resources and runs events and programs for special needs families.
Arena and her son were asked to complete a 500-question survey as part of the screening process, and have committed to 20 weeks of social groups.
What appealed to her about this study is Lerner’s concentration on trying to develop more effective treatments and therapies for ASD as opposed to looking for a cure.
“I always say, unless you’re going to do a lobotomy, [saying there is a cure] is baloney,” she said. “You can calm certain conditions of it down through behavior modification and therapy, but you cannot cure it. There’s no way to reverse how the brain has been formed. My son will have it forever.”
Schissel said Lerner’s study has the potential to change treatment options for those with autism as genome sequencing did for cancer.
Oncologists previously “threw the kitchen sink” at cancer and attacked tumors broadly. Once genome sequencing was developed, doctors could instead more easily treat tumors directly. Such an approach to ASD therapies would be more effective and “waste less time and enormous amounts of money,” she said.
Michael Greenberg, a social worker for outpatient child and adolescent psychiatry at Stony Brook Medicine, agreed that more specific treatments and therapies are more efficient and effective.
“It creates an opportunity to have the odds be the best the first time,” he said. “No one can predict what he’s going to find, but he’s trying to come up with something that can be replicated and benefit people more widely.”
The results from Lerner’s study might also be applicable to children without ASD. He said it is unclear whether the social patterns he and his team might uncover are unique to kids with autism. There is a potential for any treatments that stem from his findings to benefit any kid who struggles socially.
Sisters Denise Pianforte and Heather Richards received a new roof on their Port Jefferson Station home in February, as part of Port Jefferson Station-based A-1 Roofing & Siding's partnership with the No Roof Left Behind project. Photo from A-1 Roofing & Siding
By Rebecca Anzel
Whenever Denise Pianforte saw one of her neighbors getting a new roof installed, she hoped to soon be able to afford one as well. The Port Jefferson Station home she lived in with her sister, Heather Richards, was 60 years old.
Pianforte saw a flier on her church’s bulletin board for a program that advertised a free roof for a Suffolk County family in need. “I always pray to God to help me find a way to get the money [for a new roof],” she wrote in the online nomination form. She added that even with her and her sister each working two jobs at over 50 hours a week, it looked like the day would never come. “Seems like my only hope would be to win the lottery.”
Sisters Denise Pianforte and Heather Richards received a new roof on their Port Jefferson Station home as part of Port Jefferson Station-based A-1 Roofing & Siding’s partnership with the No Roof Left Behind project. Photo from A-1 Roofing & Siding
She did not win the lottery, but she did win the new roof. A-1 Roofing & Siding, a family owned and operated contractor in Port Jefferson Station, installed it Feb. 6.
Maria Malizia and her three brothers, who took over running the business after their father retired, became involved in the national No Roof Left Behind program last year.
No Roof Left Behind provides contractors with the necessary tools and resources to construct a free roof for a local family in need. The program was founded in 2009 by Jay and Dena Elie, the owners of a Detroit roofing firm called Ridgecon Construction.
Malizia said that they were immediately interested in the opportunity to help deserving families in Suffolk County.
“We’ve been in the community for decades and were just happy that we were finally able to give back a little,” Malizia said. “When we heard about the program, we said to ourselves, how could we not do this.”
After helping Denise Pianforte and Heather Richards, Malizia said the immediate gratification let them know they needed to continue their involvement with No Roof Left Behind.
“They were really grateful, excited and relieved that they were safe under a new roof and didn’t have to worry about any leaks in the future,” Maria Malizia said.
Councilwoman Valerie Cartright (D-Port Jefferson Station) said No Roof Left Behind is providing the community an important service.
“We are fortunate to live in an area such as Port Jefferson Station where residents and local businesses strongly believe in giving back to their community,” Cartright said. “I am sure the program will have a tremendously positive impact on the lives of the 2017 winners and I commend A1 Roofing for their sponsorship of the program.”
A-1 Roofing & Siding is a family owned and operated contractor in Port Jefferson Station. Photo from A-1 Roofing & Siding
The importance of community support is not lost on the organization.
“This is a nice way for contractors to engage the community and let them know they’re one of the good guys,” said Dena Elie, who is a member development director for the program. “No Roof Left Behind helps the community to recognize you as a shareholder there, and someone who genuinely cares and wants to support you locally.”
More than 247 roofs have been installed by 60 contractors in more than 27 states and provinces since the program’s founding.
As a participating contractor, A-1 Roofing pays an annual subscription fee to join No Roof Left Behind. That gives it access to the outreach and promotional materials Elie created, and designates the firm as the sole participating contractor in Suffolk County. It is one of two in New York — the other, Marshall Exteriors, is located in Newark.
Nominations for this year’s recipient, are open until Oct. 31 for a local family deserving of a new roof. Malizia said community members are invited to submit photos and a brief paragraph to the local No Roof Left Behind website.
Then, the roofing contractor will narrow the list down to four finalists. Malizia said A-1 considers whose roof is least able to survive the winter months. When the finalists are revealed, residents can vote from Nov. 14 to Dec. 16 for the winner, who will be announced on Dec. 23.
A-1 Roofing & Siding is a family owned and operated contractor in Port Jefferson Station. Photo from A-1 Roofing & Siding
Currently, there are four nominees — two from Sound Beach, one from Amityville and the other Nesconset.
The day the new roof is installed is usually a huge celebration, Elie said. She encourages contractors to bring members of the community to meet the winning family. A-1 has not yet set a date for the installation, but it will be using materials donated by General Aniline & Film (GAF) and delivered to the home by Allied Building Products, both national No Roof Left Behind sponsors.
“Roofing contractors are a group of big-hearted fellows,” Elie said. “They grow to care for the folks they’ve put roofs on for, and I think one of the most rewarding things to see is a sense of community develop.”
Malizia said her family is looking forward to helping more Suffolk County families.
“We all know how difficult it is to survive when you don’t have a safe roof — it’s a constant worry,” she said. “We’re going to keep participating as long as we’re able.”
From left, Vanessa Molinelli, Jennifer Dzvonar, Joan Nickeson, Donna Boeckel and Lisa Molinelli from the North Brookhaven Chamber of Commerce. Photo from Jen Dzvonar
By Rebecca Anzel
Community members young and old will enjoy good old-fashioned family fun at the North Brookhaven Chamber of Commerce’s first ever Family Fun Day on Saturday, Sept. 17 at Buttercup’s Dairy, 285 Boyle Road in Terryville (at the corner of Old Town Road). From 10 a.m. to 4 p.m., attendees of the free event will enjoy live music, a petting zoo, an apple pie baking contest, a chili cook-off, a scarecrow contest, selfie stations and more. Admission is free and there is no rain date.
An opportunity for community members to learn more about their local businesses, Family Fun Day will feature representatives from Old Town Blooms, Cumsewogue Historical Society, Stony Brook University, Bass Electric, Great Clips, People’s United Bank, Masone Natural Healing, Home Performance Technologies, R & B Electrical (Solar), Kiddie Academy, Port Jeff Bowl, Comsewogue Public Library, TFCU, Renewal by Anderson, Little Flower Children’s Services, Gutter Helmet, Coach Realtors, Everlasting Memories in Time, Kitchen Magic, PJS/Terryville Civic, Bethpage Federal Credit Union, Habitat for Humanity and Brian Yonks Chiropractic.
“It’s really an exciting event that’s going to bring local businesses and the community together,” chamber board of directors President Jennifer Dzvonar said. “Local businesses are the backbone of the community. Why not bring the community to meet them?”
Dzvonar said she is most excited for the scarecrow contest, where families are encouraged to work together to create a unique scarecrow at home and bring it to the event to be displayed. The top submissions will receive ribbons.
To further celebrate the importance of family, the event committee asked children ages 10 and under to write essays about what family fun means to them to enter into the Little Miss and Mister of Terryville contest. The winners will receive a crown, sash and flowers the day of the event. And the apple pie baking contest, Dzvonar said, will allow members of the community to bond over the delicious fall-time dessert. “The woman next door might make the best apple pie, but you’d never know it! These contests are a fun way to get to know your neighbors better.”
Planning for the event has been underway since last November, and committee member Craig den Hartog said everyone involved is “excited to just get it started.” He is going to be on hand to help set up tents and direct traffic. A volunteer with Old Town Blooms, den Hartog will also be sharing information about the community beautification project, which has planted over 20,000 daffodils in the area over the last seven years. “The fact that our event benefits the community is the most important part,” den Hartog said.
Family Fun Day was inspired in part by similar events in surrounding towns. Rich Smith, whose family owns Buttercup Dairy, said he thought Terryville should have an event to celebrate the town, like St. James does, and members of the Chamber of Commerce agreed. den Hartog and Dzvonar both said the dairy was the perfect spot to host the event. Buttercup Dairy is the main focal point for those who live in the area and is Terryville’s longest operating business. “This event is a good way to give back to the community,” Smith said. “I’m looking forward to seeing the families that will turn out for the old-fashioned fun [the committee] is planning.”
According to Dzvonar, organizing Family Fun Day was a group effort. It was “every facet of the community who pulled together and worked together to create such a great event,” she said, adding that the North Brookhaven Chamber of Commerce is hoping to make the event an annual affair hosted in each of its seven towns. “This year, we’re concentrating on Terryville. Next year, we might be in Mount Sinai, Wading River or we might be in Terryville again,” she said.
For more information, call 631-821-1313 or visit www.northbrookhavenchamber.org.
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