Leukemia survivor Aubri Krauss collected Band-Aid box donations for Stony Brook University Hospital’s hematology and oncology unit. Photo from Darcy Krauss
By Jenna Lennon
Three years ago, Jericho Elementary School student Aubri Krauss decided to start a Band-Aid drive to benefit Stony Brook University Hospital’s hematology and oncology unit.
She had been diagnosed with leukemia in 2011. At just over 3 years old, she toughed out the treatment, and when finished, decided she wanted to do something to help others.
“[I want to] bring smiles to other kids who are going through what I went through,” she said.
Leukemia survivor Aubri Krauss collected Band-Aid box donations for Stony Brook University Hospital’s hematology and oncology unit. Photo from Darcy Krauss
“We were at the pediatrician’s office, and she saw all the Band-Aids they had and she was like ‘You know what mom? We used so many Band-Aids when I was sick — wouldn’t it be great if we could get a bunch of Band-Aids for all the kids that are still sick?’” Aubri’s mother Darcy Krauss said.“When they have to get their finger pricked, those plain Band-Aids are boring. That was one of the great things for Aubri was she got to pick her own fun, kid Band-Aid.”
Last year, Aubri decided to try something different and hosted a wrapping paper drive for the events that the clinic holds for the children during the holidays.
Aubri decided to return to the Band-Aid drive this year because “she thinks it’s more personal to the kids,” Krauss said. When she began, she hoped to beat her collection of 700 boxes from her previous Band-Aid drive, and she’s done just that, collecting over 800.
“And they’re not all the little 20 packs,” Krauss said. “Some people brought boxes that have hundreds of Band-Aids, some people bought boxes that have 200 Band-Aids in it. So it’s a lot of Band-Aids.”
Middle Country Board of Education member Dina Phillips met Aubri in 2012 when her father was the assistant coach of her son’s baseball team.
“When I met Aubri, she endured countless tests, procedures, chemo treatments and much more, yet managed to do so without ever losing her sense of joy,” Phillips said. “She had to learn what it means to live part of her life in a hospital room, to lose her hair, and to lose some of the freedoms that other kids her age get to enjoy.”
“She endured countless tests, procedures, chemo treatments and much more, yet managed to do so without ever losing her sense of joy.”
—Dina Phillips
She said she was blown away by how Aubri did not let her circumstances define her.
“With a maturity far beyond her years, Aubri turned her illness into an opportunity to help other kids like her, and turned her pain into a way to bring smiles to others,” Phillips said. “I am extremely proud of her. I hope we can all do a simple gesture and help her achieve her goal.”
Band-Aid drives were held at Aubri’s elementary school, Raymour & Flanigan Furniture and Mattress Store in Lake Grove, and Stagecoach Elementary School, where Phillip’s son goes to school. The students there decorated the box for a collection at Stagecoach’s 50th Anniversary celebration on June 9th.
“I think when you go through something so hard and you can come out on the other end and be empathetic and understanding … it just makes me very happy and blessed to be her mom,” Krauss said. “Everyone is like ‘she’s so lucky to have you as her mom,’ and I’m like no, I definitely think I’m the luckier one to have her as my daughter.”
Jenn McNary and her children, above, are featured in the movie ‘To the Edge of the Sky.’ Photo from Brian Ariotti
By Jenna Lennon
Duchenne muscular dystrophy is the number one genetic killer of boys in the world.
In “To the Edge of the Sky,” Emmy and Oscar Award winning producers, and Old Field natives, Jedd and Todd Wider tell the story of four mothers in their fight against the U.S. Food & Drug Administration for the approval of a potentially life-saving drug for this fatal disease.
The world premiere of the 118-minute documentary at the 22nd annual Stony Brook Film Festival was met with a standing ovation July 23. Continued feedback from the audience, during and after the Q&A period, has been nothing but positive for the brothers and for raising awareness for treatment of this disease.
“As a documentarian, there’s no greater reward than hearing audience members come up afterwards and ask how we can help, what we can do, how can we bring further attention or shine further light on these issues and help the families that are suffering so deeply,” Jedd said.
‘To the Edge of the Sky’ is produced by Jedd and Todd Wider brothers who grew up in Old Field. Photo from Brian Ariotti
“We spoke to so many people after the film who wanted to get involved and that’s incredibly rewarding to us as filmmakers,” he continued. “We invest years of our lives into these topics to help bring attention to these issues to help these families and for us there’s just nothing greater than that, than hearing that response.”
With such a large audience, Todd couldn’t help but be emotional as he took the stage with his brother for the Q&A session.
“It was a weird thing — I’m not normally that emotional during a screening,” he said. “I got to say it …. was a little surreal. It’s not like I hadn’t seen it before. I’ve probably watched it about a thousand times now, but I found that screening was extremely, unbelievably, emotionally powerful.”
Jenn McNary, one of the mothers in the film, brought her sons Max and Austin to the July 23 premiere.
“Jenn and her family have been incredibly supportive of the film from the very beginning, as has all of the other families as well,” Jedd said. “They’ve all been strongly behind the film and hoping that this film could bring more attention to these issues and bring more attention to the potential companies out there and the foundations that are working to help fund further research.”
Filming took place periodically over almost four years and “was a significant emotional investment,” Jedd said.
“At any given point, the story line would change on the drop of a dime,” he continued. “We became very attached to these boys and very attached to these families.”
Duchenne is the most common type of muscular dystrophy and occurs from a mutation in the gene for the protein dystrophin. Symptoms begin appearing around the age of three or four. At first, young boys start having trouble walking. By their early 20s, they’re essentially paralyzed from the neck down.
“To the Edge of the Sky” examines the fight for FDA approval of the drug eteplirsen, produced by Sarepta Therapeutics, that is meant to help produce the missing protein. In 2016, and at the end of the film, the FDA granted an accelerated approval for the drug, but Todd said the fight is far from over.
“We live in the United States of America where we’re in a functioning democracy, and we can move our political organizations and our political institutions with the power of our will if we choose to,” Todd said. “And in the case of this situation, it was really these four moms that really moved the needle, we feel, on how the FDA was sort of dealing with this … it was the power of their advocacy and the connection and their love for their kids that helped to sort of focus that attention on what was going on in terms of the drug approval process in this particular case.”
Numerous trucks arrive at a construction site, each doing their part to make a blueprint for a building into a reality. In a destructive way, molecules also come together in cancer to change cells that cause damage and can ultimately kill.
Researchers often know the participants in the cancer process, although the structure of each molecule can be a mystery. Determining how the parts of an enzyme work could allow scientists and, eventually, doctors to slow those cancer players down or inactivate them, stopping their cell-damaging or destroying processes.
Recently, Michael Airola, who started his own lab at Stony Brook University early this year and is an assistant professor of biochemistry and cell biology, published a paper in the Proceedings of the National Academy of Sciences in which he showed the structure of an important enzyme that contributes to cell growth regulation in cancer and other diseases, including Alzheimer’s disease.
Called neutral sphingomyelinase, this enzyme produces ceramide, which allows cancer cells to become metastatic. Finding the structure of an enzyme can enable scientists to figure out the way it operates, which can point to pharmacological agents that can inhibit or deactivate the enzyme.
“We are trying to understand the link between structure and function to try to get the first sort of snapshots or pictures of what these enzymes look like” in the on and off states, said Airola. In his research, he showed what this enzyme looked like in its off or inactive state.
Airola joined Stony Brook Cancer Center Director Yusuf Hannun’s lab as a postdoctoral researcher in 2010, when Hannun was working in Charleston, South Carolina, at the Medical University of South Carolina. When Hannun moved to SBU in March of 2012, Airola joined him, continuing his postdoctoral research.
Michael Airola in April in New Orleans aboard the steamboat Natchez on the Mississippi River with his family, wife Krystal Airola, four-year-old Harper and two-year-old Grady. Photo from Michael Airola
Airola conducted his research at Stony Brook and Brookhaven National Laboratory, where he used a technique called X-ray crystallography, which shows the structure of crystallized molecules. Getting this enzyme to crystallize took considerable effort, especially because it has what Airola described as a floppy segment between two rigid structures.
Those floppy pieces, which Airola said aren’t the active sites of the enzyme, can interfere with the structural analysis. To see the important regions, Airola had to cut those flexible parts out, while fusing the rest of the enzyme into a single structure.
The crystallization took almost three years and was a “very difficult process,” Airola recounted. “To get proteins to crystallize, you need to get them to pack together in an ordered fashion.” He said he needed to develop some biochemical tricks to delete a large part in the middle of the protein. “Once we found the right trick and the right region to delete, we were able to crystallize the protein in about three months.”
Airola said he took considerable care to make sure removing the floppy or flexible region didn’t disrupt the function of the enzyme. Hannun and Airola are co-mentoring Prajna Shanbhogue, a graduate student who is in the process of discovering molecules that activate and inhibit the enzyme.
Hannun was pleased with the work Airola did in his lab, which he suggested was a “challenging type of research. Getting to a structure of a protein or enzyme (a specific type of protein) can take several years and is never guaranteed of success, but the rewards can be tremendous,” Hannun explained in an email, adding that Airola was a “critical contributor” and introduced structural biology to his group.
While Airola will continue to work on this enzyme, he is exploring another enzyme, in a collaboration with Hannun and John Haley at Stony Brook, that is involved in colon cancer.
Airola, two graduate students and three undergraduates in his lab are focusing considerable energy on an enzyme involved in the production of triglycerides.
Airola recently received a three-year, $231,000 grant from the American Heart Association to study lipins, a class of enzyme that plays a role both in heart disease and in diabetes. As he did with the enzyme that makes ceramide, Airola is developing a way to understand the structure and function of the triglyceride enzyme. He’d like to find out how this enzyme is regulated. “We’re trying to see if we can inhibit that enzyme, too,” he said.
Airola has “some creative ideas about using information from lipin proteins in plants and fungi, which have a less complex protein structure than mammalian lipins but catalyze the same biochemical reaction,” Karen Reue, a professor in the Department of Human Genetics, David Geffen School of Medicine at UCLA and a collaborator with Airola, explained in an email.
Reue’s lab will complement Airola’s work by conducting physiological analyses of the various “minimal” lipin proteins in processes that the mammalian proteins perform, including triglyceride biosynthesis.
While lipin proteins are necessary for metabolic homeostasis, Reue said a reasonable but still challenging goal might be to modulate the enzyme’s activity for partial inhibition in areas such as adipose tissue, while allowing the triglycerides to perform other important tasks.
Airola lives in East Setauket with his wife Krystal Airola, who is doing her residency in radiology at SBU, and their two children, four-year-old Harper and two-year-old Grady. The couple, who is expecting a third child next month, enjoy living in East Setauket, where they appreciate that they have a forest in their backyard and they can enjoy the water in Port Jefferson and West Meadow Beach.
When Airola’s postdoctoral position ended, he did a broad, national search for his next position and was delighted that he could remain at Stony Brook. “We love the area,” he said. “The research and science here are fantastic.” Airola’s collaborators are optimistic about the prospects for his research.
He is an “up and coming structural biologist that has already made important contributions to the field of lipid biology” Reue said and is a “creative and rigorous scientist with a bright future.”
The 2017 Stony Brook Film Festival will host the world premiere screening of ‘To the Edge of the Sky’ on July 23. Photo courtesy of Staller Center
Presents mix of independent features, documentaries and shorts
By Jill Webb
Drop your beach towels and grab some popcorn because the Stony Brook Film Festival kicks off tonight at 8 p.m. and will run for 10 nights. The festival’s director, Alan Inkles, who has been curating the event since its inception, said in a recent interview that the idea to showcase great films annually came to him because “film is the art of this century.”
Festivalgoers view these films in the main 1,000-seat auditorium of the Staller Center for the Arts at Stony Brook University, which features a 40-foot-wide screen for maximum viewing pleasure.
Inkles’ biggest challenge as festival director is finding the films that are going to “draw 800 people on a Thursday night — in the summer on Long Island — to a film they’ve never heard of.”
Last year, the director started using www.filmfreeway.com as a way for filmmakers to submit their films, saying the service is “the most fair to both filmmakers and film festivals” due to its piracy protection. Inkles and his team received over 1,000 submissions from the website, along with about 700 from sales agents internationally — all of which are viewed between January and May.
Diversity on the big screen
The vast number of submissions have led to greater diversity. This year’s lineup includes films from Italy, Armenia, France, Sweden and the Netherlands among others and puts a spotlight on a variety of relevant topics including the LGBTQ+ community and immigration.
The big draw this year, Inkles said, is an abundance of women directors — a demographic that often gets overlooked in the film industry. “Almost 50 percent of our films are directed by women — features and shorts,” Inkles said, adding that three of them write, direct and star in their films.
The opening and closing night films both have one thing in common: Germany. Each of these German films will be making its U.S. premiere at SBFF on its respective night. Opening the festival is “Welcome to Germany” (“Willkommen bei den Hartmanns”), written and directed by Simon Verhoeven, a ‘laugh-out-loud’ comedy about a refugee from Nigeria who, while awaiting the ruling on his asylum request, is taken in by a wealthy but severely dysfunctional family from Munich.
A scene from ‘Text for You’. Photo courtesy of Staller Center
The closer, titled “Text for You” (“SMS für Dich”), is a romantic comedy that explores coping with grief and loss. Karoline Herfurth is a triple threat in the movie’s production as director/writer/actress. The film’s main character, Clara, is struggling to get over the death of her true love and begins to send text messages to his old number. The new owner of the phone is compelled to answer these messages, creating a dialogue between the two strangers. Inkles describes the film as a “German [version of] ‘When Harry Met Sally.’”
Long Island: In front and behind the camera
While Inkles stresses that he selects films solely on being the best of the bunch, he admits he loves getting a Long Island angle in. This year’s Long Island connections includes “The Second Act of Elliott Murphy,” a documentary chronicling Rockville Centre native Elliott Murphy’s journey to rock star status, starting in mid-1970s America and eventually traveling to Europe where his career takes off.
While the film is set in Maine, a great deal of “The Sounding” — which follows a woman who has chosen to remain silent until a traumatic experience leads her to speak in only Shakespearean words — was shot here on Long Island.
The 2017 Stony Brook Film Festival will host the world premiere screening of ‘To the Edge of the Sky’ on July 23. Photo from Staller Center
Academy Award winners and Ward Melville graduates, Todd and Jedd Wider, have been making films together for 19 years. Their documentary “To the Edge of the Sky” focuses on mothers trying to get FDA approval for a drug to save their sons affected by the fatal disease Duchenne muscular dystrophy (DMD). Jedd Wider got the idea for the film at an event listening to a Harvard-educated doctor talk about his son’s experience with DMD and the extents his family was going through to save his life.
“I was mesmerized by what he had to say,” Wider said. After the event, a Google search on the doctor, Benjy Seckler, lead Wider to his first meet-up with a family challenging DMD. The film watches the mothers transform into “very serious political activists as they attempt to rally the FDA,” Wider said. “It’s really a window into the FDA system, but it’s also a very serious look and window into the troubles, the issues, the challenges, the tragic circumstances surrounding these families as they attempt to find a cure and secure that cure for their children.”
The short “Brothers” will be screened before the Wider brother’s film and is directed by another Ward Melville graduate, Zachary Fuhrer. “Brothers” tells a story of a 9-year-old boy who deals with experiencing guilt after accidentally hurting his little brother while playing baseball. Fuhrer looked back on the way he dealt with confrontation as a child as inspiration for the film. The take-away Fuhrer hopes the audience gets is “what it truly means to say I’m sorry, and what it truly means to show compassion for another person and understand wrong-doing.”
Exploring your options
Presented by Island Federal Credit Union, the festival will run through July 29. For $85 you can purchase a Festival Pass to see all of the films, along with promotions for local restaurants through labor day, seating guaranteed up to 15 minutes prior to the showing, first entry for preferred seating options and some merchandise freebies: a film pass, lanyard and tote bag.
If you’re looking for something a bit more lavish, try the Gold Pass: For $225 you get all the perks of the Festival Pass but also entry into the Opening and Closing Night parties along with access to the VIP seating with the filmmakers. Individual tickets are $12 adults, $10 seniors and $5 with a student ID. Free parking is available in the Visitors Parking Garage during the festival.
For more information on the program, tickets and trailers check out www.stonybrookfilmfestival.com or call the Staller Center Box Office at 631-632-2787.
Alyssa Iryami, left, and Audrey Shine, right, stand by their SuperSilk presentation at the July 14 Clean Tech Contest. Photo from Corbett Public Relations
Stony Brook University was bursting with “clean” and “green” alternatives July 14 thanks to high school students competing in the international Spellman High Voltage Electronics Clean Tech Contest, a competition geared to challenging teenagers to identify and create solutions to environmental and green building problems.
Now in its sixth year, July 14 was the first time the international competition took place on Long Island. It was hosted by the Center for Science Teaching and Learning of Rockville Centre, which encourages children to learn about science, technology, engineering and mathematics.
The nine teams on hand — which included seven from the United States, one from Singapore and another from the Philippines — competed for the top prize of $10,000. The teams earned their spots in the finals after beating out 230 other teams from around the globe in previous competitions.
This year’s theme was Creating a Greener Future, and the contestants outlined their findings for solutions in topics such as sustainability, green building, “sick” building syndrome and energy efficiency.
In the end, two Plainview-Old Bethpage John F. Kennedy High School students, Alyssa Iryami, 15, and Audrey Shine, 16, emerged the winners with their SuperSilk project. Feeding silkworms graphene, an allotrope of carbon, the girls were able to create strong, natural silk to construct low-cost water purification filters.
After the competition Alyssa and Audrey were ecstatic about their win.
“It’s been such a journey,” Audrey said in a statement. “It’s been a long day. It’s been a long year really because we started this in September, and now that we got this far I can’t believe it.”
Audrey said that both of their grandfathers had experience working with silkworms — hers in China and Alyssa’s in Iran.
The girls said it’s important for young people to get involved in creating green solutions. Alyssa said the sooner such solutions are applied the more people can do to protect the future of the planet to prevent “devastation and destruction.”
Loren Skeist, president of Spellman High Voltage Electronics, back row right, and finalists in the July 14 Clean Tech Contest. Photo from Corbett Public Relations
“Right now the world needs more environmentally friendly options considering that there’s a lot of pollution and water levels rising,” Alyssa said.
Loren Skeist, president of Spellman High Voltage Electronics, a Hauppauge-based company that sponsored the event, said in a statement the company became involved because the competition touches on important issues and topics that are of interest to the business, plus other aspects were attractive to them.
“The manner in which it’s done both in terms of focusing on practical applications that can have a meaningful impact on one of the central issues of our time, and working as teams and then providing the contestants with an opportunity to interact with teams and high schools from other areas around the world, it’s just a wonderful concept,” he said.
Skeist was not a judge at the event, which he said enabled him to interact with the teams more so than the judges were able to. He said he appreciated the students’ enthusiasm, energy and creativity, and the winners’ concept was extraordinary. He said he hoped the competition will encourage the contestants to continue with innovative green projects and support similar activities by others.
“I learned from their presentations,” he said. “And it gets me excited about the opportunities to use technology to address important issues. They made me maybe more aware of issues that I hadn’t even been fully aware of [before], and some that I had been aware of but was not aware that there was this kind of approach to solve.”
Ray Ann Havasy, director of the Center for Science Teaching and Learning of Rockville Centre and Long Island administrator of the competition, said all the team members possessed creativity, which she said most people don’t realize is a big part of science. She said she was pleased with this year’s venue.
“This place has such a reputation for science and technology,” she said in a statement about Stony Brook.
The administrator of the competition said she was impressed by the winners’ enthusiasm.
“Something simple as silk combined with something that we know of graphene — I think how excited they were that something so common can become something so great,” she said.
Havasy said she hoped students such as the ones involved in the competition will inspire other young people to become involved in STEM education and work on green projects.
“The earth is changing and we need to save it,” she said. “I hate to sound pessimistic but if we don’t believe we can save it, it’s going to keep going the way it is.”
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