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LiveOnNY

Pictured left to right are Town Clerk Kevin LaValle; Councilman Neil Foley; Manager, LiveOnNY Community & Government Affairs, Karen Cummings; Councilwoman Jane Bonner; Supervisor Ed Romaine; Deputy Supervisor/Councilman Dan Panico; Councilman Michael Loguercio and Councilmember Jonathan Kornreich. Photo from TOB

At the September 18 Brookhaven Town Board Meeting, Councilwoman Jane Bonner was presented with the Advocate Award from LiveOnNY in recognition as a legislative partner who is committed to promoting organ donation and the work of LiveOnNY.

This year marks the 7th anniversary of Councilwoman Bonner’s donation of one of her kidneys to Tom D’Antonio, her friend of more than 40 years. During the presentation, Councilwoman Bonner spoke of her own experience as a living organ donor and the need for people to step up and register. For information about organ, eye and tissue donation, and to enroll online in the New York State Organ and Tissue Donor Registry, visit www.donatelifeny.org.

Pictured left to right are Town Clerk Kevin LaValle; Councilman Neil Foley; Manager, LiveOnNY Community & Government Affairs, Karen Cummings; Councilwoman Jane Bonner; Supervisor Ed Romaine; Deputy Supervisor/Councilman Dan Panico; Councilman Michael Loguercio and Councilmember Jonathan Kornreich.

LiveOnNY is a nonprofit, federally designated organ procurement organization (OPO) dedicated to saving lives, providing comfort, and strengthening legacies through organ, eye, and tissue donation. The OPO, which was established in 1978, serves a culturally and ethnically diverse population of 13 million residents in New York City, Long Island and the lower Hudson Valley.

Working closely with transplant centers and hospitals, LiveOnNY coordinates organ, eye, and tissue donation for transplant, educates the public and healthcare professionals about donation and transplantation, and promotes the importance of signing up on the New York State Donate Life Registry. LiveOnNY works closely with 11 transplant centers, nearly 100 hospitals, and several tissue and eye banks. LiveOnNY is a member of the United Network for Organ Sharing (UNOS), which oversees the organ transplant waiting list in the U.S. For more information, please visit LiveOnNY.org. 

Ann Pellegrino, with volunteer Elaine Gaveglia and caretaker Peter Castorano, brought Bethel Hobbs Community Farm back to life more than a decade ago. Photos by Laura Johanson

By Laura Johanson

Many people face difficulty in their lives — some struggle, many endure — and then there are those that transcend. Ann Pellegrino, founder and director of Bethel Hobbs Community Farm in Centereach, is one of those rare individuals. She has faced hardship and heartache and transformed both into gestures of generosity and hope.

“Ann is an incredible, hard-working woman who always shines brightly with her smile and by her continued and valued efforts in our community,” said Tom Muratore, Suffolk County Legislator (R-Ronkonkoma). “We’ve watched her and her loving family go through crisis and challenges that only focused her and showed who she really is.”

Jeff Freund, president of The Greater Middle Country Chamber of Commerce, also has praise for her.

“People like Ann are the lifeblood of our community,” Freund said. “Her selfless devotion through her efforts at Hobbs Farm are in my mind heroic.”

The accessible Garden of Ephraim, at the farm. Photos by Laura Johanson

For more than 100 years Hobbs Farm in Centereach was a working farm, but it was only a vacant lot in 2007 when Pellegrino began the initiative to bring its barren soil back to life. The idea of a farm came to her years before when, as a single mother, she had to visit a local food bank. Pellegrino saw firsthand that the only items available to those in need were boxed or canned goods. The seed of an idea was planted.

Back on her feet and remarried in 2006, Pellegrino began to reflect on her turn of fortune. Deciding it was time to give back, she planted a small garden in her yard in the hopes to grow enough produce to donate. “I was on a mission, rented a rototiller and started ripping up our beautiful, manicured lawn,” she said. “My husband wasn’t too happy.”

It didn’t take long for Pellegrino to realize she needed a lot more land. That’s when the vacant lot down the road came to mind.

“I knew it was once a farm and that the owner had died,” Pellegrino said.

Alfred Hobbs, owner of the land, was a second-generation farmer and part of the first African American family-owned farm on Long Island. Upon his death, Hobbs bequeathed the land to Bethel AME Church in Setauket. Pellegrino was hopeful when she sought out the church’s pastor.

“I thought it would be easy to convince him to let me work the land,” Pellegrino said. “I gave it my most enthusiastic pitch but the response I got was ‘we will pray on it.’ I was devastated. I remember afterward falling to my knees to pray for guidance,” Pellegrino recalled. “I went back to the church and on my second visit spoke with Rev. Sandra, the pastor’s wife. It was she who finally convinced him to let me give it a try. So, I planted a few tomato plants that were donated by a local greenhouse and brought the harvest back to the church.”

The following year, with the church’s blessing, Pellegrino recruited family, friends and other volunteers so that Hobbs Farm could begin its incredible rebirth. Peter Castorano was among the first farm volunteers and now serves as caretaker.

“Many people volunteer an hour or two and are very helpful, but Ann and I are here all day long, day after day,” he said.

Today, the farm is self-sufficient with most of the 50,000 pounds of food grown donated to several local food banks. Farm expenses are covered by money raised at fundraisers held throughout the year.

Tragedy amid growth and triumph  

In 2011, tragedy struck the Pellegrino family. Pellegrino’s son Christopher was paralyzed in a terrible car accident. She faced the heart-wrenching reality of having to care for her now disabled son while struggling to also nurture the growing farm.

“He was 19, paralyzed from the neck down and on a ventilator,” Pellegrino said. “It was so hard, after helping to build the farm, Chris was no longer able to even visit, and I was limited because I couldn’t leave him alone,” she said. “We’d spoken about creating access for disabled veterans before Christopher’s accident.” 

“People ask me why I do it, and I answer if your child was in need wouldn’t you want someone to make that choice?”

Ann Pellegrino

She confessed that those discussions had always been put on hold because of the difficulties of construction.

“It frustrated me,” Pellegrino said. “Everyone saying it was too hard. I didn’t truly understand until my son was in a wheelchair.” 

Refusing to give up, Pellegrino pushed forward and once again turned “something bad into something good.” With the help of people at Stony Brook University, she approached the Christopher Reeve Foundation and secured a grant for a wheelchair-accessible garden.

“We were able to create an asphalt walkway to the road and rows of raised beds,” the farm owner said.

The new space, officially opened in 2014, was named the Garden of Ephraim, which means fruitful in Hebrew. Now all individuals, wheelchair users or otherwise, have access to community gardening at Hobbs Farm.

Pellegrino attributes Christopher’s strong will to a sort of transformation over the next few years.

“After the accident, he really gained focus and started to live,” she said.

In addition to gardening, he began talking to local groups about his disability and clean living.

Heartbreak and a gift in 2018 

“Years ago, I was a recipient of donated corneas,” Pellegrino said. “Last fall my driver’s license needed renewal, and I once again marked myself down as a willing organ donor. I remember mentioning it to Chris. He said he too wanted to donate someday. ‘Why not mom? When the time comes, I won’t be needing them anyway’ he told me.”

Sadly, the time came only a few months later when Christopher experienced a severe brain aneurysm.

“He was brain dead,” Pellegrino said softly. “I knew what he would want me to do, and we donated several of his organs so that a small part of him could live.”

Pellegrino entered 2019 with a renewed passion. She continues her work at Hobbs Farm and now also volunteers with LiveOnNY, a nonprofit that promotes organ donation.

“People ask me why I do it, and I answer if your child was in need wouldn’t you want someone to make that choice?”

Today, Hobbs Farm supplies countless people with fresh produce; residents with restrictive disabilities have a space to garden and grow; and three men live on because of the gift Pellegrino and her son made through organ donation.  

“She truly deserves this recognition and honor, because Ann Pellegrino is and has always been my person of the year,” Muratore said.

 

Pushing through the early morning cold and rains on Sunday, Huntington residents raced to support organ and tissue donations.

“I think we did fantastic for a first time run,” said Michele Martines, run organizer and mother of a heart transplant recipient. “For the cause, we’re going to save some lives.”

Roughly 130 runners helped to raise nearly $5,000 for LiveOnNY, a nonprofit association dedicated to recovering organs and tissues for transplants in the New York metropolitan region, at the 5K Race to Save Lives held April 29 at Harborfields High School. The event was sponsored by  Simply Fit Health and Wellness gym, which has locations in Centerport and Huntington,  Huntington Hospital and several Huntington Town officials.

The event recognized two donor recipients including Councilman Mark Cuthbertson’s (D) son, Hunter Cuthbertson, who had to receive a bone marrow transplant in 2017, and Martines’ son, Christian Siems,who celebrated the third year after his heart transplant April 25.

A lot of people don’t know about organ transplants, that or they have misconceptions and they just assume things.”
 Christian Siems

Hunter Cuthbertson was diagnosed with aplastic anemia during a precollege physical in 2016. Aplastic anemia is a failure of the bone marrow to produce the necessary amount of red blood cells. Though the chance of finding a perfect match in bone marrow with a relative is only 25 percent, the younger Cuthbertson found that his brother was a perfect match.

“I was elated when I learned he was a match, I dropped to my knees and I was crying,” he said. “But he’s one of the lucky ones. The other 75 percent need to go the unmatched registry. The larger the registry the larger the chance that someone’s going to get saved.”

He underwent a week of chemotherapy before having a bone marrow transplant performed in March 2017.

Siems learned his heart was beginning to fail before he turned 21. He had an external defibrillator installed and tried to move toward college, but after getting progressively more tired and sick he was airlifted to Westchester Medical Center where he was told he would need a heart transplant. Luckily for Siems in just six months he received a call that they found a donor.

“I’ve known [Siems] since I’ve moved here, and it’s been hard watching Christian go through what he has,” Joe Bertolini, Siems’ neighbor and overall winner of the 5k, said. “He’s come to talk to us at our school about what he’s been through. It’s inspirational.”

Siems has taken up publicly speaking about the need for organ donors to local schools and community organizations.

Only about 32 percent of New Yorkers are registered to be donors, in some states its over 56 percent.”
 Karen Cummings

“A lot of people don’t know about organ transplants, that or they have misconceptions and they just assume things,” he said. “I go out there and talk to kids, the next generation and I educate them on what it is, and not to be scared of it. It’s one of the greatest gifts you can give.”

Despite the two young men’s luck in finding donors, they are not the average case. New York State is currently ranked last in terms of number of residents who are registered as organ donors, according to LiveOnNY’s website. There are currently 9,359 people waiting on organ donations in the state.

“Only about 32 percent of New Yorkers are registered to be donors, in some states its over 56 percent,” Karen Cummings, a public and professional education specialist for LiveOnNY said. “We are the fourth fastest growing registry, but New York is still at the bottom of the list.”

A number of people who raced were the recipients of organ or tissue donations. Huntington resident Hal Strauss, who in August 2017 collapsed as he was doing his regular bike exercise. He was rushed to Huntington Hospital where he learned he needed a new liver.

“You just wait by the phone,” Strauss said. “I was able to get my organ in seven months, but I’m an anomaly. For other people it can take years.”

New York residents can register as organ donors whenever they visit the DMV, register to vote, register for health insurance through the health benefits exchange or
online at LiveOnNY’s website

Donate Life supporters during a rally. File photo

By Kevin Redding

As of Feb. 14, National Organ Donor Day, a new state law rolled out by Gov. Andrew Cuomo (D) permits 16- and 17-year-olds to enroll in the New York State Donate Life Registry when they apply for a driver’s license, learner’s permit or nondriver ID, potentially growing enrollments in New York by thousands.

Sponsored by State Sens. John Flanagan (R-East Northport) and Kemp Hannon (R-Garden City), the legislation’s altered minimum age to sign up as an organ donor, which had previously been 18, serves as a big step for New York, which currently ranks 50th out of all 50 states when it comes to the percentage of residents enrolled to be organ donors.

Kidney recipient Tom D’Antonio and Brookhaven
Town Councilwoman Jane Bonner. Photo from Councilwoman Bonner

At just 28 percent, New York State is “way at the bottom of the pack” when it comes to enrollment, according to Flanagan, a strong advocate for organ donations because of his late friend, Assemblyman James Conte (R-Huntington Station), who was the recipient of two kidney transplants before losing a battle with cancer in 2012.

“[New York] has been a leader in many ways on a wide variety of issues and we should be the premiere state in terms of organ donation,” Flanagan said. “I just want to promote organ donation, and promote awareness. There are thousands and thousands of people who are waiting for transplants here in the state, kidney being the primary one. We don’t have enough people signing up, and it’s taken too long to [get here] but I think we’re moving in the right direction.”

The senator said Conte is the reason he’s a donor, and after his death, he realized he could use his own political platform to advocate for this cause and encourage others to get involved.

Like Flanagan, Brookhaven Town Councilwoman Jane Bonner (C-Rocky Point) is passionate about organ donation and takes every opportunity to raise awareness about the importance of becoming a donor when speaking publicly, regardless of the event.

“I could be at a civic event talking about town improvement projects or town issues, and I always use it as a soapbox to talk about organ donation,” Bonner said. “Roughly 125,000 people in the United States are waiting for a kidney and there are 350 million people in the United States, seemingly with healthy kidneys. If everybody who could donate, donated one, we wouldn’t have people waiting for a kidney anymore and lives can be saved.”

Bonner said that under the new law, 16- and 17-year-olds can make donations upon their death, and it includes safeguards where their parents or legal guardians have the option to rescind the decision if the minor dies before 18.

“It not only ups the amount of eligible organ donors there are to sign up and save lives, but also starts a conversation at an earlier age about its importance.”

— Megan Fackler

“Teenagers are very passionate about so many issues and I think this legislation was made because they’re employing every toy in the toolbox, knowing the state is dead last,” she said.

The councilwoman knows a thing or two about saving lives this way.

It was last April when Bonner donated her kidney to her childhood friend Tom D’Antonio, who had been diagnosed with diabetes at a young age, had suffered multiple health issues over the years and desperately needed a transplant.

“I said ‘I’ll do it, we’re the same blood type,’ and I donated blood to him when he got his first kidney transplant,” Bonner recalled.

D’Antonio was more than grateful for the donation his longtime friend made.

“I bounced back like a rockstar and I feel great, I have more energy and determination,” D’Antonio said, reflecting on the experience. “It’s my belief that there is something within a human being that takes that step and makes that heroic move to save a life; it moves me beyond a place I can easily describe. Not only did [Jane] save my life but she enriched the lives of those close to me, [like my wife].”

But D’Antonio is not a big fan of the new law, calling it “hugely irresponsible” and a “grossly inadequate response” to appease a need for more donors. 

“Sixteen- and seventeen-year-olds have enough trouble making a decision about what classes to take as seniors, their minds are still developing, and I’m appalled that this is the state’s answer,” he said. “What the state should do instead is put some money and effort into organ donor awareness and make it part of the teaching curriculum in high school.”

Karen Hill, the recipient of Tom Cutinella’s heart, and his mother Kelli Cutinella. Photo from Kelli Cutinella

Alternatively, Kelli Cutinella, whose son Tom died October 2014 following a head-on collision during a high school football game, spoke in Albany to help get the law passed, and said she’s glad to see it in effect.

Tom, who wanted to register when he was 16 at the DMV but was ultimately not allowed at the time, donated all vital organs, such as his heart, kidneys, liver, pancreas, bones and skin.

“He was a giver in life and would do anything for anybody, and it didn’t surprise me that he wanted to register at 16, it was just in his nature,” Cutinella said.

The mother, who has an ongoing relationship with Tom’s heart recipient and pancreas and kidney recipient, was recently notified by a New York Burn Center that a 30-year-old man from Brooklyn had received Tom’s skin after suffering severe burns in a house fire.

“Tom lives on now,” Cutinella said. “He’s not here in the physical sense, but he is with the recipients as they go on to live wonderful, fulfilling lives.”

According to Megan Fackler of LiveOnNY, a federally designated organ procurement organization, the new law is exciting.

“It not only ups the amount of eligible organ donors there are to sign up and save lives, but also starts a conversation at an earlier age about its importance,” Fackler said. “Donor family and recipient meetings have been the most touching. There are lots of things 16- and 17-year-olds can’t do, like rent a car, get a tattoo, vote, join the army, but they can save lives.”

Residents can visit the New York State Health Department’s website at www.health.ny.gov/donatelife to get more information about organ donation in New York State, including how to register as a donor.