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Steve Kramer raising money to bring Berlinda to U.S. to undergo surgery on her two clubbed feet

By Desirée Keegan

Through the efforts of a retired physicist, an orthopedic surgeon from Stony Brook University and a dedicated Haitian who has since moved to Long Island, a 16-year-old from Haiti is on a path with more open doors than ever.

Berlinda was born with two clubbed feet, though she is motivated to better herself, with the dream of one day walking on her own two feet. Steve Kramer, a retired Brookhaven National Lab accelerator physicist met the student in Haiti through Life & Hope Haiti, a nonprofit founded by Haitian-American Lucia Anglade, who built the Eben Ezer School in her hometown of Milot, Haiti.

Berlinda practices arithmetic. Photo from Steve Kramer

“She had only been at the school for a few months and she was already learning basic arithmetic,” Kramer said of seeing Berlinda back in March, after meeting her during her introduction to the school in December. “I gave her two columns of work and she handed it back to me with a big smile and said, ‘more.’”

Berlinda has spirit, according to many who have met her, and Kramer was so moved by the story that he reached out to Dr. Wesley Carrion at Stony Brook University School of Medicine’s orthopedics department about performing surgery to fix the girl’s feet. He agreed to do it free of charge.

When he contacted Carrion, Kramer said his secretary Joan mentioned he was deployed in Afghanistan and she didn’t know when he would return. Within a day or two she called to tell him she’d heard from the doctor, who said he’d return by April. In May, the two met.

“I sent him copies of Berlinda’s X-rays and the video and he said he felt he could treat her and rotate the feet, and he would donate his time and get the equipment donated,” Kramer said. “That was a big relief. I felt it might become a reality.”

Carrion had informed Kramer that he would need to get the hospital to donate some of the costs, so Kramer reached out to the Department of Medicine’s Dr. L. Reuven Pasternak, who serves as vice president for health systems and chief executive officer of Stony Brook University Hospital.

What the external cages look like that will be used to repair Berlinda’s clubbed feet. Photo from Steve Kramer

“He said they would cover her hospital costs,” Kramer said after his meeting with Pasternak in July. “This was a bigger relief since beside rotating the club feet we need to check out the status of the hole her spinal column might still have from the spinal bifida she was diagnosed as having. Everyone told me the hole doesn’t close up on its own, but she is doing so well that it may have, but it needs to be checked and closed if it is still open.”

To help bring Berlinda to the United States, Kramer set up a GoFundMe to raise money for her flight cost and other post-operation expenses.

“The fundraising has been going slower than I had hoped, even though everyone I contact is verbally supportive,” he said. “As a physicist my human appeal needs a lot of improvement to really move people to give. But then I look at the video and see the determination she has and feel she will deal with it as she has the tragic events she has already endured and I know she will persevere and will learn to walk.”

Following the surgery, Berlinda will be in the hospital for four months, getting her feet rotated to stretch the tendons as part of the healing process. Her legs will be in cages called external frames that will be attached by pins drilled into her leg bones. Because these create open wounds, it’s best for her to stay the hospital instead of returning to Haiti, to keep the wounds sterile. While recovering, she will continue to go through schooling, which will be one-on-one instead of in a larger classroom back in Haiti.

Without the construction of The Eben Ezer School, Berlinda’s struggles might never have come to light for Kramer. What began as a 10-child school back in 2001 has grown to population over 400, according to Anglade.

“I took the $7,000 I received from my tax return and decided I wanted to build a school in my home country — that had been my motivation,” said Anglade, who now lives in West Babylon. “I’m so blessed. I thank God for that, say thank you all the time. It’s a big school now, and we’re still helping.”

Berlinda crawls on her hands and knees because she cannot walk with her two clubbed feet. Photo from Steve Kramer

Anglade first visited Berlinda at her house, and heard from the 16-year-old how her brothers and sisters attended school, and she wished she could join them. Because the school is far from her house, she couldn’t walk there.

“I went to her house and she was quiet, said she can’t go to school,” Anglade said. “I told her I was going to help her, and I took her to the school. I pay someone to stay with her at the school. Her dream is to walk, to learn, to be someone. She wants to be happy.”

Kramer and Stony Brook University Hospital are making her dream a reality.

“Thank God for Steve — he has a good heart and I can’t do it by myself,” Anglade said. “With all my heart, I am so happy. Steve has put in a lot of effort to helping Berlinda make her dream come true.”

Kramer first visited the Eben Ezer School through Wading River’s North Shore United Methodist Church in 2015. He joined a group visiting Haiti in February, and has since visited three more times by himself and with Anglade. They are working toward improving the facilities at the school through solar power and updating the water system.

Kramer also provided economic opportunities for students and natives of the town. He cultivated a group of farmers that grow ancient Egyptian wheat, kumat, which is exported to the U.S.

Now, he’s trying to help provide a future for Berlinda.

“She’s very positive, she’s a sponge for learning,” he said. “I just want to help this Haitian girl who has had a tragic life story so far, but has kept her joy of life and has determination to improve herself.”

Sixteen-year-old Berlinda from Haiti will be receiving surgery on her two clubbed feet at Stony Brook University Hospital. Photo from Steve Kramer

Amy Miller, of Maine, who has helped Anglade since 2007, said she finds what Kramer is doing admirable.

“I met Berlinda and I really respect his desire to help her move forward,” she said. “You meet someone and they kind of capture your heart, and I think you have to follow your heart. That’s what he’s doing.”

Both said they are also moved by Anglade’s motivation.

“I am tremendously inspired by Lucia,” Miller said. “She’s a force. Lucia is a person that astounds most people that meet her — her energy and her commitment. She loves the kids and it’s wonderful to watch. The community once said she should be their mayor after she brought water to the school she also to the community. She’s quite something.”

Anglade said she’s just doing what she thinks is right, in giving back to her hometown.

“My four kids here go to school, they’re in college, they eat every day, but in Haiti, we don’t have enough to feed over 400 kids, so sometimes when we’re down there for a week or two, we can only feed them for one week,” Anglade said. “I can’t go every week, but if I could go every week, every month, I’d go, just to help them. For me to be able to go down there to help those students, my community, I’m so happy to do it. I really feel good about it.”

To donate to help get Berlinda to the United States and to receive the care and post-treatment she will need, visit www.gofundme.com/BerlindasMiracle. To find out more about Life and Hope Haiti, or to get involved, visit www.lifeandhopehaiti.org.

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Tennis players participating in a mixed doubles game in 1967 including Andy Kevey, second from left, and Linwood Lee, right. Photo from Susan Falvey

By Rita J. Egan

The first tournament of the U.S. Open is scheduled for Aug. 28, but Flushing Meadows isn’t the only place in New York filled with tennis history. Since 1959, the Three Village Tennis Club on Main Street in Setauket has provided lifelong memories for its members.

Susan Falvey’s parents, Marta and Andy Kevey, were founding members of the club. She said the women would organize bake sales, fashion shows and dances to raise money, while the men helped maintain the property and the original court. In 1959, yearly dues were $15 for children, $25 for adults and $50 for families.

Marta and Andy Kevey after a tournament at the club in 1967. Photo from Ann Fossan

To her, the spot is a hidden treasure.

“The club is still very active today,” Falvey said. “It’s very simple — we don’t have a clubhouse or anything, but the courts are still in good condition.”

Falvey has fond memories playing as a child at the club and then afterwards riding bikes with friends along Main Street to go to the Jack in the Box near where the Setauket Fire Department firehouse is located today.

In an essay about the club, Andy Kevey wrote of the founding members securing a single tennis court, donated by The Setauket Neighborhood House located behind a barn.

“That old cracked asphalt court went through three metamorphosis each year: tennis court, to basketball court, to ice skating rink,” he wrote. “It had a net for tennis, two baskets for practicing shooting and 6-inch raised borders that allowed it to be flooded in the winter.”

The club hasn’t changed much through the decades, except for the number of courts and who can join. As the population in the area grew in the 1960s, the club limited its membership to residents of the Three Village Central School District.

As the club evolved, six green clay Har-Tru courts were added, and the original asphalt-based court was eventually converted to clay in the 1980s, as water doesn’t drain properly on a harder court. Once the asphalt court was converted to clay, interested players were able to join quicker. Before that, there was a five-year wait.

Wayne Mercer, who joined the club in the late 1980s and has served various positions on the board, remembers due to spacing issues that affected play, court four was moved away from court three and seven away from six. Improvements were also made so the courts would drain better.

“Courts that no one wanted to play on became very playable,” he said.

Current board member Randy Conard’s mother Marion was the first president, and one of the organization’s co-founders. He said the founding of the club was a community effort, where the original board members were trying to expand the popularity of tennis in the area.

Conard said his mother, who died in 2008 at 86, played tennis for decades at the club. His mother’s involvement, he said, “was all for the love of the community and tennis.”

Conard said members would take vacations together, going to resorts and playing tennis. Through the decades, families gathered on the club grounds for barbecues and picnics.

“It was a very tight-knit community,” he said.

Joe McDonnell playing tennis on court two at the club in 1967. Photo from Joe McDonnell

Joe McDonnell moved to Setauket with his family in 1964. A preteen at the time, McDonnell said he could walk to the club by cutting through his neighbor’s backyard. He played at the Three Village Tennis Club for years and as a young man would help maintain the courts. He said his years at the club led to him teaching tennis at Harbor Hills and the Old Field Club during his time in college and graduate school, and in the late 1980s he became a member of the Three Village Tennis Club board.

“It was a club with extraordinary spirit,” McDonnell said. “Like many organizations are when they are first founded, there’s that entrepreneurial spirit.”

McDonnell said he looked up to and learned a great deal about tennis from founding member Bob Pereira, who was also his dentist.

Among the many Stony Brook University professors who were members of the club was Linwood Lee, who still teaches at the college. He said as soon as he found a home in Stony Brook he looked for a tennis club for his family to play at, and enjoyed the camaraderie at the local club.

“It’s been a wonderful place to play tennis and a wonderful place to meet friends,” Lee said.

McDonnell said the club has always helped younger players improve and employed great tennis pros. He recalled Ineke Fisher, who lived in Florida with her husband. During the summers, the couple would come to New York, and Ineke would teach at the Three Village Tennis Club while her husband taught at the Old Field Club. McDonnell said Ineke’s instructions were a mixture of technique and court etiquette.

Once a year the club holds a Wimbledon Woody social event using old wooden rackets like it used to in years past.

“It was a far more finessed game,” McDonnell said, recalling the days he used to only swing a wooden racket. “It was a slower game, but it required you to move a player around a court and not just overpower them.”

Another annual competition at the club is the mixed doubles Van Slyke Tournament. McDonnell said he still remembers Dr. Don Van Slyke, for whom the tournament was named. Van Slyke was a biochemist at Brookhaven National Laboratory, who played well into his 80s.

McDonnell moved to Maine six years ago, but said when he visits Long Island, he makes sure to stop and play at the club. He is considered an honorary member.

“This is a wonderful asset to the community,” he said. “It’s into another generation at this point, but it’s become very much established.”

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Joseph and Maddie Mastriano, co-founders of Three Village Kids Lemonade Stand, held the fifth annual fundraising event at R.C. Murphy Junior High School. Photo by Rita J. Egan

By Rita J. Egan

Thirteen-year-old Joseph and 17-year-old Maddie Mastriano turned lemons into lemonade and then turned a lemonade stand into an annual fundraising event that has raised thousands for Stony Brook Children’s Hospital.

The Three Village Kids Lemonade Stand event was held on the grounds of R.C. Murphy Junior High School in Stony Brook Aug. 2. What started as a simple lemonade stand in front of the Mastrianos’ home one hot day five years ago has turned into a summer event that draws hundreds from the local community to show their support.

Maddie said when she and her brother set up their first lemonade stand, neighborhood children helped them out. They sold lemonade for 50 cents, and at the end of the day, they weren’t sure how to split the few dollars they made amongst 16 kids. Their mother suggested giving the money to a charity, and they decided to donate the money to the children’s hospital since it was in the area.

Volunteers set up the lemonade stand. Photo from Three Village Kids Lemonade Stand

Through the years, the lemonade stand, formerly known as the S-Section Kids Lemonade Stand, began to draw more customers when neighbors discovered through word of mouth that the Mastrianos were donating the money. After serving nearly 500 customers last summer, the family approached the Three Village school district this year to see if the annual event could be held at one of the school’s properties, and the district agreed.

While their first lemonade stand enlisted the help of various neighborhood children, this year’s event included more than 100 volunteers from the school district.

“It’s amazing to know that all those people want to help out with this cause,” Maddie said.

Among the volunteers were the siblings’ cousins Sierra Edwards, 14, Savanna Edwards, 11, and Zoie Mastriano, 11. The girls were helping out at the T-shirt table, and they all said they were amazed at what their relatives had accomplished.

“I don’t know any young kids who have done something like this before,” Zoie said.

At press time, the Mastriano siblings raised more than $19,000 towards their 2017 goal of $20,000. In addition to local residents attending their Aug. 2 event, donations were accepted on their website, and the siblings solicited the help of sponsors. Maddie said they noticed various fundraisers that partnered with companies so she and her brother decided to approach local businesses.

Maddie said it feels good to give back. It’s something she and her brother have learned from her parents who she said are always helping out wherever they can and have been a good influence.

While the event has turned into more than selling lemonade, with corporate sponsors, the Setauket Fire Department on hand giving demonstrations, and the Ward Melville alumni band SWIM performing, the siblings said they enjoy donating their time. Maddie said they think of the children in the hospital who don’t have the chance to enjoy their summer vacation like they do. 

“This is our way of giving back,” Maddie said. “We give them one day of ours to possibly give them summers in the future.”

The Mastriano siblings receiving a proclamation from Brookhaven Supervisor Ed Romaine and Town Clerk Donna Lent. Photo from Three Village Kids Lemonade Stand

The Mastrianos estimated that 400 people stopped by throughout the day including Brookhaven Supervisor Ed Romaine and Town Clerk Donna Lent, presenting them with a proclamation; celebrity chef Barrett Beyer of Hell’s Kitchen, making gourmet lemonade; Mr. Met, greeting guests; and Stony Brook University men’s basketball and women’s soccer teams. Three Village Central School District Superintendent Cheryl Pedisich and board Trustee Inger Germano also stopped by.

County Legislator Kara Hahn (D-Setauket), who grew up in the Three Village school district, has attended the event for the last few years.

“It has been exciting to see it grow and evolve, from block to neighborhood to community event in such a short time,” Hahn said in an email. “This annual event highlights the generosity of spirit within the Three Village community and the compassion of its organizers and volunteers. It is reaffirming to see children and teenagers work so enthusiastically, and with such empathy, to try and ease the suffering of others.” 

Joan Alpers, director of Child Life Services at Stony Brook Children’s Hospital, attended the event and delivered a short speech. She said the funds the children raised will go towards programs such as horticulture therapy, art therapy and music therapy for children plus relaxation sessions for stressed parents.

Alpers said she is amazed by Joseph and Maddie’s work and the community’s support of the children.

“I just think it’s really phenomenal that kids did this one year but then had the resources to do it again and to grow it each year,” Alpers said. “That takes skill, dedication and a special human spirit for a young person.” 

Maddie and Joseph’s father Joseph Mastriano, who was volunteering at the event, said he is proud of his children.

“It teaches them lessons they don’t necessarily learn in school,” the father said. “They went out on their own and solicited different businesses. I think it’s a good experience for them all around.”

Next year’s lemonade stand is scheduled for Aug. 8, 2018 at R.C. Murphy Junior High School. For more information about Three Village Kids Lemonade Stand or to donate, visit www.threevillagekidslemonadestand.com.

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Above, Alesi, the skull of the new extinct ape species Nyanzapithecus alesi. Photo by Fred Spoor

By Daniel Dunaief

They were in a terrible mood. They had spent an entire day searching for clues about creatures that walked the Earth millions of years ago and had come up empty.

“We were not finding even a single bone, nothing,” recalled Isaiah Nengo, who will be an associate director of the Turkana Basin Institute and an assistant research professor at Stony Brook University this fall.

Alesi after attached sandstone rock was partially removed at the Turkana Basin Institute, near Lodwar, Kenya. Photo by Christopher Kiarie

One of the fossil hunters in the group, John Ekusi, started rolling a cigarette. Nengo told him to move away from them so that they didn’t inhale second-hand smoke. Walking ahead, Ekusi made a spectacular discovery that Nengo called a “freak of a fossil.” Ekusi pointed out a bone sticking out of the ground that looked like the femur of a large animal. When they got closer, they could see that it had brow ridges. Pushing aside dirt, they saw the outline of a primate skull.

“We knew we had found something unique and we started celebrating right there,” Nengo said. “We were dancing and high-fiving. The thrill was unimaginable.”

Nengo and his team discovered the fossil on Sept. 4, 2014, in northern Kenya. This week, a team of researchers from the United States, France and England are unveiling three years worth of research into this remarkable find in the prestigious research journal Nature.

For starters, the researchers had to confirm the date of their fossil, which was about the size of a lemon. Rutgers University geologists Craig Feibel and Sara Mana studied the matrix around the fossil and the area around it.

Akai Ekes and John Ekusi watch as Isaiah Nengo lifts the sandstone block with Alesi after six hours of excavation. Photo from ​Isaiah Nengo

“There was no doubt that [the fossil] came from this deposit and hadn’t rolled in or washed in” during some later period, explained Ellen Miller, a professor of physical anthropology at Wake Forest University.

Next, they had to figure out what kind of primate they had: It could have been an ape or a monkey. Fred Spoor, a paleontologist at University College London, did an initial CT reading using a medical scanner. He found intact molars that were characteristic of apes.

The researchers wanted to do a more thorough analysis of the three-dimensional shape of the skull, so they called Paul Tafforeau, a paleoanthropologist specialist of X-ray imaging who works as a beamline scientist at the European Synchrotron Radiation Facility in Grenoble, France. Typically, such research centers require scientists to wait a year or more.

As soon as Tafforeau saw the photos, Nengo recalls, he said, “You can bring it in anytime.” Tafforeau used a technique called propagation phase contrast–X-ray synchrotron microtomography. In an email, Tafforeau described it as being close to a medical scanner, but 1,000 times more precise and sensitive.

Over the course of three or four days, Tafforeau analyzed the teeth that hadn’t erupted from this young primate, which indicated that this individual died when it was only 16 months old. The teeth also demonstrated that the toddler, whose gender is difficult to determine because of its age, belonged to a new species, called Nyanzapithecus alesi. The name Alesi comes from the Turkana word “ales,” which means ancestor.

Tafforeau said the thickness of the tooth enamel suggest a classic hominoid diet, which would be similar to that of a modern gibbon, and would consist mostly of fruits and leaves. Researchers estimate that an adult of this species would weigh about 20 pounds.

Turning their attention to the fantastic creature’s ears, the researchers found that it didn’t have a balance organ. That means it couldn’t move as rapidly through trees as a gibbon. The ears of this primate, however, did have fully developed bony ear tubes. These ear structures “absolutely confirmed that these were apes,” said Miller. “We had no specimens between 15 million and 10 million years ago.”

Field crew of the​ Stony Brook University-affiliated​ Turkana Basin Institute​ when Alesi​ ​was discovered​ ​at​ Napudet​ in September 2014. From​ ​left, Abdala Ekuon, John Ekus​i, Isaiah Nengo,​ ​Bernard Ewoi, Akai Ekes and Cyprian Nyete.​ Photo from Isaiah​ ​​​Nengo.

Scientists generally believe apes and humans diverged in their evolution about 7 million years ago. That means this toddler ape belongs to a species that is likely a common ancestor for other apes and humans.

Anthropologist Meave Leakey, a research professor in the Department of Anthropology and the Turkana Basin Institute, suggested that this fossil “gives us a picture for the first time of what the ancestor of apes and humans looked like 13 million years ago. It also suggests,” she continued in an email, “that the nyanzapiehecines were close to the origin of all living apes and humans.”

Leakey described the fossil as one of the most complete skulls of an ape ever found anywhere and indicated it was of an age that is poorly represented in the African fossil record.

The three years between the discovery of the fossil and its unveiling to the world in the Nature article is “actually very quick,” Leakey explained. The images captured through the synchrotron provide detailed pictures of structures that would otherwise be hidden by bone.

Gathering and interpreting these images meant traveling to Grenoble, which, she explained, “takes considerable time.”

Researchers involved in this study said this is just the beginning of the work they will conduct on this rare and detailed fossil. Nengo said they had already collected two terabytes worth of data from their scans. Much of the further study of this ape will involve a closer examination of all of that data.

“A paper coming out in Nature makes it seem like the end of the process,” Miller said. “This is just the beginning.” He is intrigued to learn more about the organization of the brain.

Nengo hopes to bring together researchers for a two- or three-day workshop in September or October at Stony Brook University to tackle the next phase of analysis for Alesi.

As it turns out, September will likely become an important anniversary for Nengo, as he recalls the memory of a day three years ago that didn’t start out particularly well, but that ended with a rare and thrilling fossil find.

Nengo recalled how excited he was to return to the Turkana Basin Institute to show Richard Leakey, the founder of the site, Meave Leakey and Lawrence Martin, the director of TBI. “I had photos on my iPad and they were absolutely thrilled,” said Nengo. “Everybody was beginning the guesswork of wondering what it is.”

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Local family goes from organizing basket raffles to hosting international symposium

Many battling the autoimmune disease APS Type 1 and their families, above, attended a symposium at Stony Brook University organized by Dave and Sherri Seyfert of Stony Brook. Photo from Sherri Seyfert

By Rita J. Egan

When their son Matthew, now 17, was diagnosed with Autoimmune Polyglandular Syndrome Type 1 11 years ago, Sherri and Dave Seyfert’s world was turned upside down.

The diagnosis led the Stony Brook couple to join the cause to find a cure for the rare autoimmune disease that affects 1 in 2 million people in the United States, and the results of their efforts culminated recently with the Second International Symposium on APS Type 1 at Stony Brook University July 13 through 15, an event they organized and hosted.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time.”

—Dave Seyfert

The Seyferts with Todd and Heather Talarico of New Jersey founded the APS Type 1 Foundation with the main goal of making physicians more aware of the rare disorder. In the last decade, the families have raised $500,000 for research through fundraising events, which includes basket raffles organized by the Seyferts at the Setauket firehouse on Main Street.

The Seyferts said the basket raffles were always popular thanks to the support of local businesses and residents, and their fundraising success led to the hosting of the July symposium that gave researchers an opportunity to share information. It also provided patients and their loved ones a chance to find a much-needed support system.

Attendees traveled from all over the country as well as Ireland and South America to share their experiences. The couple said life after a diagnosis can sometimes be lonely for families.

“The symposium gave [families] the opportunity to share, to be able to provide each other with support and also listen to the researchers giving them hope that there’s a lot of research going on out there,” Sherri Seyfert said.

The Seyferts said “there are a lot of moving pieces” when it comes to APS Type 1, because the body has trouble metabolizing Vitamin D, which helps in the process of providing calcium to bones and muscles, including the heart.. A patient can experience various symptoms including cramping, bone mass problems and an irregular heart rhythm. However, a triad of disorders identifies the disease: adrenal insufficiency (Addison’s), hypoparathyroidism, and Candidiasis.

The Seyfert’s son Matthew was diagnosed when he was six years old. Photo from Sherri Seyfert

“So everybody is actually a little bit different as far as what conditions they have, even though they’ll share three things,” Dave Seyfert said. 

He said the disease overall is manageable, even though patients can develop something new every decade of their life.

“Each time we have a hospitalization or emergency room visit or are in ICU, for the most part we learn something that will keep us out of there for that particular thing next time,” the father said.

He said the couple chose the university to recognize the contributions of Stony Brook Children’s Hospital  to the community and their quick diagnosis of Matthew when he was six years old. At the time he was experiencing excessive fatigue and suffered a seizure in kindergarten. His father said it took 48 hours for the team at Stony Brook to diagnosis his son. It can sometimes take years to identify the disease in a patient.

The couple said the symposium included a section for children and teenagers to interact separately from adults. Matthew attended the event and assisted in escorting guests and served as a microphone runner during the Q&A.

Dr. Andrew Lane,  professor of clinical pediatrics in the Division of Pediatric Endocrinology at Stony Brook Medicine, and Dr. Mark Anderson, director of University of California, San Francisco’s Medical Scientist Training Program, were among the speakers at the symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference.”

—Dr. Andrew Lane

“I thought it was really uplifting,” Lane said. “It was really great to see all the families supporting each other. It was also great for the physicians and scientists in the audience to interact, and informally and formally hear each other’s work and help recognize what areas need further work.”

Anderson, who met the Seyferts at the first symposium in Toronto, Canada in 2015, said there is hope for those diagnosed with APS Type 1. He said with stem cell transplants, the thymus, a gland that sits in front of the heart and plays a part in APS Type 1, may possibly be reprogrammed.

“That’s the type of thing that families want to know that someone is working on the problem,” Anderson said.

Lane, who was part of the team that diagnosed Matthew, said the symposium was the perfect opportunity for families to raise concerns directly to internationally recognized researchers in the field, and he is amazed that the family went from organizing basket raffles to hosting a symposium.

“I think that [the Seyferts] are just a fantastic example of encouraging people to believe that for whatever medical condition or other condition in the world they are interested in fixing, even small things can make a difference and sometimes turn into really big things,” Lane said.

Matthew was too shy to comment on the event, according to his mother, but she said the whole family was left with hope after the three-day symposium.

“People were thanking me, and my response always was it’s an honor to be able do this for everyone,” his mother said.

For more information about APS Type 1 and future events, visit www.apstype1.org.

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Award winners at the Closing Night Awards reception, from left, Catherine Eaton, writer/director/actor/co-producer of ‘The Sounding’; Todd and Jedd Wider, directors of ‘To the Edge of the Sky’; Nadav Shlomo Giladi of ‘Across the Line’; Michael Ferrell, writer/director/actor/co-producer of ‘Laura Gets a Cat’; Robin Grey, producer of ‘Purple Dreams’; and Pavels Gumennikovs of ‘Just, Go!’ Photo by Nick A. Koridis for the SB Film Festival

The 22nd annual Stony Brook Film Festival, presented by Island Federal Credit Union, wrapped up with a Closing Night Awards Reception on July 29. The evening recognized the outstanding new independent films screened at the festival, which was held at Staller Center for the Arts at Stony Brook University from July 20 to 29. John Anderson, film critic and master of ceremonies, and a longtime MC for the awards reception, announced the winners.

The event attracted the largest attendance ever this year. Filmmaker participation also broke records with directors from Armenia, Bulgaria, England, France, Germany, Israel, Latvia, Netherlands, Spain and USA representing their films at the screenings. In addition, films from Finland, Iran, Italy, Norway and Sweden were in the mix.

From left, John Anderson, film critic and MC for the awards reception; Karoline Herfurth, writer/director/actress; and Alan Inkles, director of the Stony Brook Film Festival attend the Stony Brook Film Festival’s Closing Night’s U.S. Premiere of ‘Text for You.’ Photo by Nick A. Koridis for the SB Film Festival

“It truly was a magical year where almost every filmmaker attended their screenings to represent their films and host Q&As,” said Alan Inkles, founder and director of the Stony Brook Film Festival, adding, “As for the films we showed, the audience scores were the best in our 22 years. Great films, great guests and packed houses nightly. It’s what I envisioned for Stony Brook when we started this festival and it was certainly achieved this year.”

Two of the filmmakers whose film won an award at the festival grew up in the Three Village area. The Wider brothers’ documentary followed four families as they fought the FDA to gain access to a lifesaving drug to help their sons, all coping with Duchenne muscular dystrophy. The world premiere of Todd and Jedd Wider’s documentary “To the Edge of the Sky” was awarded the Audience Choice Award for Best Feature along with “Fanny’s Journey,” which tied with an identical high score.

“The Stony Brook Film Festival is an incredibly well curated and intelligent film festival. It celebrates independent film from around the world and gives its audience a chance to discover great films and interact with filmmakers,” noted Todd Wider. “Supremely well run and organized, each film is shown once in a giant, state-of-the-art theater to a routinely packed crowd. This format really works well here, as the entire community focuses on one film at a time. Set in one of the most beautiful towns on Long Island and backed by a powerhouse university, the audiences are really smart and very welcoming. Don’t miss this festival [next year]. It’s a wonderful experience,” he said.

Among the many highlights of the festival was the U.S. premiere of the rock documentary, “The Second Act of Elliott Murphy.” The singer-songwriter Elliott Murphy, a Garden City native, moved to Paris after a music career with his band in the U.S. and then found new success in Europe. At the screening of his film, he hosted a Q&A and then played three of his songs from the stage.

Closing Night presented the U.S. premiere of “Text for You” (“SMS für Dich”), a romantic comedy. The writer, director and actress Karoline Herfurth came in from Germany to represent her film.

And the winners are:

2017 Jury Award — Best Feature

“The Sounding” (United States)

2017 Audience Choice — Best Feature (tie)

“Fanny’s Journey” (France)

“To the Edge of the Sky” World Premiere (United States)

2017 Special Recognition by the Jury — Spirit of Independent Filmmaking

“Laura Gets a Cat” (United States)

2017 Special Recognition by the Jury — Achievement in Social Impact

“Purple Dreams” New York Premiere (United States)

2017 Jury Award — Best Short

“Across the Line” World Premiere (Israel)

2017 Audience Choice Award — Best Short

“Just, Go!” (Latvia)

For more information about the Stony Brook Film Festival, visit www.stonybrookfilmfestival.com.

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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.”

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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.”

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Michael Airola. Photo from SBU

By Daniel Dunaief

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.”

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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.

Film Festival Schedule

Thursday, July 20

Opening Night

8 p.m. “Welcome to Germany”

Friday, July 21

7 p.m. “Walking David”

Short: “Game”

9:30 p.m. “Let Yourself Go”

Short: “Rated”

Saturday, July 22

4 p.m. “Ethel & Ernest” (animated)

Short: “Snowgirl”

7 p.m.“The Sounding”

Short: “Icarus” 9:30 p.m.

“Love Is Thicker Than Water”

Short: “Waiting to Die in Bayside, Queens”

Sunday, July 23

4 p.m. “To the Edge of the Sky”

Short: “Brothers”

7 p.m. “Fanny’s Journey”

Short: “Who Sank Your Ships?”

9:15 p.m. “Tonio”

Short: “Oma”

Monday, July 24

7 p.m. “Apricot Groves”

Short: “The Simon’s Way”

9:15 p.m. “Strawberry Days”

Short: “The Dog and the Elephant”

Tuesday, July 25

7 p.m. “Little Wing”

Short: “Real Artists”

9:15 p.m. “From the Land of the Moon”

Short: “Interrogation”

Wednesday, July 26

7 p.m. “Laura Gets a Cat”

Short: “Speak”

9:15 p.m. “The Second Act of Elliott Murphy”

Short: “Just, go!”

Thursday, July 27

7 p.m. “Purple Dreams”

Short: “Across the Line”

9:15 p.m. “Hanna’s Sleeping Dogs”

Short: “AmeriKa”

Friday, July 28

7 p.m. “The King’s Choice”

9:30 p.m. “The Midwife”

Saturday, July 29

Closing Night

8 p.m. “Text for You”

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