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Amanda Perelli

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Andrea Lambe, right, of Port Jeff, poses with Sen. Tim Scott and fellow parent with an autistic child, Karla Peterson, in Washington. Photo from Andrea Lambe

By Amanda Perelli

A Port Jefferson resident joined a contingent that trekked to Washington, D.C., to advocate for facilities that offer therapeutic treatments for mental health disorders like autism.

Andrea Lambe headed to Capitol Hill in May and spoke with lawmakers on the role of therapeutic treatment programs and to call for improvements to the credentialing process for therapeutic schools and programs.

Her son, Joseph, has severe autism and lives at the Anderson Center for Autism, located in Staatsburg. Lambe drives about three hours every weekend to see him, because places like these are rare around the country.

“He’s in a good place that allows all kinds of involvement,” Lambe said. She has gotten involved beyond caring for the needs of her son, joining an advocacy group that the Anderson Center formed for parents. 

The center is a member of the National Association of Therapeutic Schools and Programs, an organization whose mission is to serve “as an advocate and resource for innovative organizations which devote themselves to society’s need for the effective care and education of struggling young people and their families,” according to its website.

“NATSAP members join together to have a voice in Washington, D.C., because we believe it’s imperative to educate legislators on the importance of tackling mental health issues including autism,” said Megan Stokes, executive director of NATSAP, in a statement. “We explained to those on the Hill how NATSAP programs help fill the gap of mental health programs for adolescents and young adults that are not being met by publically funded programs.”

Lambe met up with some two dozen other people from different therapeutic schools around the country. 

“We discussed the role of therapeutic treatment programs in today’s society and how these programs benefit at-risk adolescents and young adults confronting serious and life-threatening mental health issues including autism,” Lambe said. “We emphasized the stringent credentials required of those facilities that are NATSAP member programs.”

She met with U.S. Sen. Kirsten Gillibrand (D-New York) and Rep. Lee Zeldin (R-Shirley) as part of a 15-member delegation from NATSAP as well as Rep. John Faso (R-New York), Rep. Mark Sanford (R-South Carolina) and members from the offices of Sen. Lindsey Graham (R-South Carolina), Sen. Tim Scott (R-South Carolina) and Rep. Mark Walker (R-North Carolina). 

“I loved it because I feel like we are so welcome because it’s such a bipartisan issue,” Lambe said. “Everyone can relate to it. I almost feel like they are welcoming us in to tell our stories. I was shocked and really amazed with how much time they spent with us and how, Democrat or Republican, they all seemed to be genuinely concerned and gave us a lot of time to tell our stories.” 

Lambe said Faso agreed to tour the Anderson school and see the environment. 

“No one really knows how to deal with this population and it just kind of gets scrambled and tossed aside sometimes,” Lambe said. “The big problem is when he turns 21 and the school district says goodbye. There is very limited housing — another huge issue for the aging autism population.”

The NATSAP delegation discussed its desire to promote legislation that improves the credentialing process for all therapeutic schools and programs in North America, according to a press release.

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The Goodgrief app

By Amanda Perelli 

When Huntington resident Kim Libertini isn’t teaching, she’s working on building a digital social network for others, like herself, who are coping with personal loss and grief.

Libertini found help dealing with her personal loss through private messaging with Robynne Boyd, of Atlanta, and now the two have created a tool they hope will help others do the same. The plan for Goodgrief, a mobile app that allows grieving individuals to anonymous connect and chat one-on-one with each other, started in late 2016. 

Kim Libertini and Robynne Boyd are co-founders of the Goodgrief app

“I had lost my partner,” Libertini said. “It was the summer of 2015. I was in the process of navigating the grief path. A friend that knew my partner that passed also knew Robynne, who at the time was going through a different form of grief.”

Boyd’s marriage had ended before she learned that her mom was diagnosed with metastatic breast cancer. A mutual friend felt Libertini could understand Boyd’s situation, as the Huntington resident had been previously divorced and her mother had died of illness. So he introduced them in a group text message. 

“Eventually we just privately started chatting,” Libertini said. “We kind of navigated our different grief paths for the course of a year, just through texting, and in a year we built a friendship backward.” 

The two women started talking about their grief and losses first, according to Libertini, but as their relationship grew, they started sharing surface-level details with each other about their families and day-to-day lives. 

“As we were developing this friendship through texting and this support system for each other, we realized we were onto something and that we should offer this to other people,” Libertini said.

After researching the concept online, Boyd and Libertini failed to find a private one-on-one service — not a Facebook support group or blog. Together, they moved to fund a new app through a partnership with Winnona Partners, an Atlanta-based mobile developer. 

The Goodgrief app

Users of the Goodgrief app create a profile including details such as their age, type of loss, who they lost, how long ago the event occurred and can note extra features such as his or her religious affiliation if it is important. Each individual can then choose if he or she wishes to make a connection based on factors such as someone of the same gender or grieving from the same type of loss. Personal contact information, such as phone number or email, is not revealed by the app unless users choose to exchange it after connecting. 

The app has had more than 700 downloads and 500 active users since its soft launch in January. Boyd and Libertini have utilized users’ feedback to improve the experience, revising and adding more features to the app. Boyd, a writer, came up with the name Goodgrief. 

“Goodgrief is clearly a term we use when we feel overwhelmed and as if there is too much to cope with,” Libertini said. “Simultaneously Goodgrief can mean that there is good to be found.” 

The Huntington resident said she is grateful for the deep friendship she’d built with Boyd in sharing their pain and helping one another cope. 

Using social media, Libertini said the women have been trying to spread the word of Goodgrief, and hope the app’s community will continue to grow. She wanted to see the app help others, like it’s helped her. 

“It’s been a silver lining,” Libertini said. “When you experience a tragic loss it’s often very difficult to accept what’s happening. I think it’s given me some type of purpose. It’s given me focus, and it’s given me the ability to see something that’s very terrible that’s happened to me as something good for someone else.”

When asked if the two co-founders have plans to meet face-to-face in future, Libertini said, “We’ll probably save that for Oprah.” 

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The Port Jefferson ferry. Photo by Alex Petroski

By Amanda Perelli

Using public transportation in downtown Port Jefferson is no easy task, especially for those with vision, hearing or mobility impairments.

On April 17, Stony Brook University occupational therapy students evaluated the accessibility of the Suffolk County bus line, Long Island Rail Road and The Bridgeport & Port Jefferson Steamboat Company ferry in downtown Port Jeff, for their capstone project. Richard Brenza, Paulina Chrostowski, Shirley Lin, Puja Rai, Eric Wong and Wendy York were the students conducting the evaluation. Their goal was to see how difficult it would be for people with various impairments to navigate from the ferry to the train station a mile-and-a-half south on Main Street. They worked with five Suffolk Independent Living Organization volunteers — a nonprofit organization dedicated to aiding the disabled live independently — with visual, hearing and or mobility impairments, and presented their report at Village Hall in a private meeting May 22, which included representatives from Suffolk County Transit. Trustee Bruce D’Abramo attended the meeting on behalf of the village.

Students from Stony Brook University evaluate the accessibility of transportation services from the ferry to the train station in Port Jeff for people with various impairments. Photo from SBU

“Port Jefferson village is right next to our campus, it’s basically a college town,” Lin said. “Being that it is a place where a lot of us hangout, it was appropriate for us to see how accessible it is for individuals, or our classmates, who may have vision, hearing — any mobility impairments.”

The students received help in executing the evaluation from Pamela Linden, clinical associate professor, and Karen DeChello, clinical assistant professor — both of the occupational therapy program at SBU — and Amy Menditto, SILO’s NY Connects director.

“Our service learning projects are benefiting organizations and communities, rather than clinical practice,” Linden said.

Justin Ainsworth, outreach advocate at SILO, participated in the project alongside the other volunteers. Ainsworth has a power wheelchair and said he has no prior experience trying to ride the bus and was surprised he could.

“The [village] is fairly accessible, but there are always things that’ll make it easier,” Ainsworth said.

Before the group attempted to get on the bus, they came across an unexpected problem and asked themselves, “How would the visually impaired members cross the street alone?”

“I am a blind person who goes all over and for me to actually cross the street I have to put my hand up, put my foot out on the street and say ‘stop’ — and pray that they would stop so I could get to the other side,” said Marilyn Tucci, outreach and advocacy coordinator at SILO and one of the visually impaired volunteers.

“People with mobility impairments or vision impairments or hearing impairments, it’s not as easy for them to run down the corner to where the bus was.”

— Wendy York

The three-way intersection crossing from south to north on East Broadway adjacent to Main Street lacks a traffic stop light and audible walk signal, but the hurdles didn’t stop there.

The S61 Suffolk County Transit bus, which travels from the ferry dock to Patchogue railroad station and back, stopped down the street from its posted location, creating an added obstacle for the group of 11,
according to York.

“For us able bodies that are young, we can go to that bus that stops at a different place around the corner down the street,” York said. “People with mobility impairments or vision impairments or hearing impairments, it’s not as easy for them to run down the corner to where the bus was.”

The group arrived at the Port Jeff LIRR station, but struggled to board the train with ease as they had hoped, York said. They needed to track down the conductor and set up a ramp, which is the only way a person in a wheelchair can access the train.

“The gap that is in between the train car and the platform on the LIRR was, like, 8 inches and according to [Americans with Disabilities Act] standards it should be no more than 3,” York said. “I was with someone who was visually impaired so I helped her cross that gap, but she had told me previously — when she was alone — that there was a gap like that and her foot actually fell in between the car and she was stuck for a minute, which is obviously scary if the train were to move and no one knew. Luckily it didn’t.”

The students recommended small changes in consistency in their final report, like adding visual and audible traffic announcements for individuals to rely on.

“I think the most eye-opening part about it was seeing how many flaws there are in the system that still need to be worked out,” Brenza said. “It’s a lot better than it used to be, but there’s still a long way to go.”

Port Jefferson’s stop on the Long Island Rail Road. File photo by Erika Karp

The students got the chance to present their findings and interact with people from different transportation organizations at the meeting at Village Hall. Members of Suffolk County Transit told them the best way for something broken to get fixed is to call the company line directly and report it, according to Wong.

“They wanted to understand why the problem occurred and wanted to fix it, so it wouldn’t happen at another time,” Wong said. “We learned that it is not entirely Port Jeff’s responsibly to make all of the changes.”

The six students graduated June 22, earning master’s degrees in occupational therapy. The volunteers said they were grateful for the students efforts and both groups said they hoped the findings would make a lasting impact on the community.

“It’s a beautiful village and people with disabilities want to enjoy it, and it’s almost impossible to them to enjoy it unless they have sighted help,” Tucci said. “I hope the village and county and the town will really do something to put more lights there — and audible lights, especially by the ferry.”

D’Abramo said at a public meeting June 4 he told the students and SILO representatives he was eager to hear their findings, and reassured them the village would be an advocate in helping to deal with the transportation agencies involved.

“I tried to give them an idea of how many different agencies we were dealing with here — the MTA, the ferry, New York State Department of Transportation and Suffolk County busing,” he said.

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Smithtown Guide Dog Foundation puppies get used to different smells, like various plants, at Suffolk County’s Association for Habilitation and Residential Care sensory garden in Shoreham June 13. Photo by Amanda Perelli

By Amanda Perelli

Guide Dog Foundation puppies were tested for their obedience at Suffolk County’s Association for Habilitation and Residential Care sensory garden in Shoreham June 13.

Dogs aged 4-to-11 months were invited to the garden, designed to stimulate children and adults with intellectual and developmental disabilities, to acclimate the animals to a place they may soon be visiting with new owners.

Smithtown Guide Dog Foundation puppies get used to different sounds, like drums, at Suffolk County’s Association for Habilitation and Residential Care sensory garden in Shoreham June 13. Photo by Amanda Perelli

Human guests of the garden can test their hearing by playing one of the giant instruments or smell the vertical hanging herbs like basil and mint.

The Smithtown-based nonprofit’s nine four-legged members did the same, as they became familiar with strange sounds, textures and smells and walked over pavers, asphalt, rocks, dirt, grass and puddles in the garden’s splash pad.

“We are here today to be able to give back to the community — to give our puppy raisers the opportunity to have their dogs experience all these different sights, sounds, smells and distractions,” said Jordan Biscardi, a puppy adviser in charge of the volunteer dog raisers who guided the event.

He tested each puppy on how well it could remain seated between its raiser’s legs under a table, seamlessly walk past another dog and react to its raiser with a “paw” shake.

“When you go out in the real world with a guide dog, they are going to come across everything,” Biscardi said, adding the owners raise the dogs from 8 weeks to between 1 and 2 years old.

This is the sensory garden’s second season, and the first time hosting the Smithtown-based Guide Dog Foundation.

A trainer walks her dog around Suffolk County’s Association for Habilitation and Residential Care sensory garden in Shoreham June 13. Photo by Amanda Perelli

“It’s designed for the purpose of stimulating the senses,” said Leeana Costa, director of development of the nonprofit AHRC Suffolk. “We have some residential services here that we have for the individuals that we support, and this space is designed to be available to them and to their families — anyone in the community — and that way it is an integrated space, which is something that’s important to AHRC Suffolk.”

Residents of the campus Monica Marie Antonawich, Chrissy Koppel and Pam Siems enjoyed watching the
puppies, learning about the Guide Dog Foundation and later getting the chance to interact with them. They said they are big animal lovers and as members of AHRC Suffolk’s self-advocacy group, recently collected food, blankets and beds for the animals at the Smithtown Animal Shelter.

“I thought it was wonderful, I really did,” Siems said of the event. “I’ve had dogs all my life and I would love to take one home — I love them. We wanted to help the animals this year. We collected dog bones and some things for the cats, too, and we want to continue doing this for the summer.”

Inviting the Guide Dog Foundation felt like a natural tie-in, Costa said. It was an educational, interactive and engaging experience for everyone.

“We serve a different population of individuals with disabilities,” she said. “We thought that this would be a nice partnership between both organizations, so that we could build awareness for the great work that each organization is doing — and everybody loves puppies. It was a successful and productive partnership for all.”

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By Amanda Perelli

The recognized valedictorians and salutatorians of the Middle Country school district were active community members who set a positive example for this year’s graduating class. The driven students excelled in and outside the classroom, engaging in several extracurriculars and college-level classes.

Centereach valedictorian Anthony Roman and salutatorian Olivia Zhu. Photos from Middle Country school district

Centereach High School 

Valedictorian Anthony Roman graduated with a 98.2 GPA and was recognized by the college board as an AP Scholar with Distinction and a National Merit Scholar. He was enrolled in 14 AP classes at Centereach and four other college-level courses.

Roman was a member of several clubs and organizations within the district, including the Thespian Honor Society, Italian Honor Society, National Honor Society, the school newspaper and Science Olympiad team.

He is attending Massachusetts Institute of Technology this fall to study mechanical engineering and computer science. 

Salutatorian Olivia Zhu, who graduated with 11 AP courses and two college-level courses under her belt, also earned the recognition of National AP Scholar with Distinction from the College Board.

A member of National Honor Society, Tri-M Music Honor Society, and Math and Science Olympiad teams, Zhu also made time for sports, competing as a member of the varsity tennis team since eighth grade. She served as captain and earned most valuable player nods from her coach the past two seasons.

She will be attending Cornell University to study computer science and engineering this fall.

Newfield valedictorian Photos from Middle Country school district

Newfield High School

Valedictorian Logan Ortiz graduated with an unweighted GPA of 98.7 and more than 40 college credits. He participated in student government, National Honor Society and Tri-M Music Honor Society and served as
captain of the Mock Trial team while also remaining president of the Video Club.

Ortiz was also busy serving as captain of the golf team.

He plans to attend Georgetown University next fall and study political science. He said he hopes to attend law school and has his eye on becoming a government official.

Salutatorian Diogo Martins finished his high school career with an unweighted GPA of 98 and more than 45 college credits.

During his four years at Newfield, Martins helped out with almost every fundraising event in the school and served in leadership roles in the Thespian Honor Society, World Languages Honor Society and National Honor Society.

Martins will attend Villanova University in the fall and intends to major in finance.

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Former New York Mets player Ed Kranepool, at podium, discusses the importance of organ donation at a June 12 rally in Setauket organized by John Tsunis, right. Photo by Anthony Petriello

By Amanda Perelli

For one sports legend, life has thrown him a curveball, but he’s not sitting it out on the bench.

Former baseball player Ed Kranepool, a member of the 1969 Miracle Mets, is rallying for New York state residents to bring miracles to the 10,000 state residents beside him on the organ transplant waiting list. Kranepool is in need of a kidney transplant due to diabetes-related kidney issues. He’s lived with the disease for the last 40 years.

To help him with his mission, John Tsunis, CEO and chairman of Gold Coast Bank and the owner of the Holiday Inn Express Stony Brook, organized a rally June 12 at the Gold Coast Bank in Setauket. Community
business leaders of the Three Village Chamber of Commerce, representatives from the Suffolk County Legislature and The Ward Melville Heritage Organization came together for the rally, where those in attendance vowed to sign donor registration forms.

“It’s time for us to act and enroll as organ donors. One organ donor can save up to eight lives.”

— John Tsunis

“It’s time for us to act and enroll as organ donors,” Tsunis said. “One organ donor can save up to eight lives. One organ donor can change the course of history for a child in need or a New York Mets legend, like Ed Kranepool. So today many of us are filling out a form, a simple form, committing to do one thing. That’s to donate life.”

Tsunis said the donor registration forms can be found at all of the Gold Coast Bank branches.

“If I understand the statistic correctly, we are 50 out of 50 states to donate organs, and I don’t want to live in a state that is selfish like that,” Tsunis said. “If we have the opportunity to fill out this form and donate an organ when the time is appropriate — we could help somebody else in our lives and in our community.”

Based off the percentage of population registered, New York state is ranked 51 out of 52 registries in the country for participation, according to Aisha Tator, New York Alliance for Donation executive director.

“The awareness, that’s the whole key,” said Kranepool, who attended the rally. “People need to be aware of the programs that are available.”

The 73-year-old’s procedure will take place at Stony Brook Hospital if a match is found.

“Not everybody has to go to Manhattan,” said Kranepool — who lives in Woodbury — about the hospitals Long Island has to offer. “The biggest and the finest and whatever, you know they are certainly out on Long Island, so it’s right in your own neighborhood.”

Forms can also be downloaded at www.donatelife.ny.gov/register.

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