Circle of Life Magazine: Spring/Summer 2017 by NJ Sharing Network

SPRING/SUMMER 2017 Volume 8 Issue 1

A MOTHER’S ENDURING LOVE

“I couldn’t imagine not letting her save the lives of others.” Patti Jackson, mother of organ donor Zoë Gina Jackson

CELEBRATION OF LIFE A PUBLICATION OF

What You Need to Know

JOE’S CORNER NJ Sharing Network is celebrating 30 years of saving lives!

OUR MISSION

NJ Sharing Network is committed to saving and enhancing lives through the miracle of organ and tissue donation and transplantation. BOARD OF TRUSTEES Bruce I. Goldstein, Esq., Chair Howard A. Nelson, Vice Chair Michael P. Hedden, Treasurer Bonnie Evans, Secretary Vito Pulito, Immediate Past Chair John Creel Edward J. Florio, Esq. Anthony L. Marchetta Bruce Markowitz, ACHE Ciro A. Scalera Nancy E. Shafer-Winter, MSN, RN, NE-BC, CPHQ Antoinette Spevetz, M.D. Timothy J. Touhey Charles G. Walker Ex-Officio Members Joseph Roth, President and CEO John Radomski, M.D. Chief Medical Director Mark J. Zucker, M.D. Advisory Board Chairman ADVISORY BOARD Mark J. Zucker, MD, Chair Loretta Aigner, RN Gail Clegg Roseann DiBrienza, MS, RN Stuart R. Geffner, MD Michael Gould, MD Sarah E. Jensen, Esq. David A. Laskow, MD James Lim, MD Debra L. Morgan, MSW, LCSW Shamkant Mulgaonkar, MD Trish O’Keefe, PhD, RN John S. Radomski, MD, FACS Prakash Rao, PhD, MBA, FACHE, HCLD Bruce Stroever Harry Sun, MD Dorian J. Wilson, MD FOUNDATION BOARD Marla Bace, Chair Randi Geffner, Vice Chair Philip S. Kolm, Vice Chair Dan Sarnowski, Treasurer Honorable F. Michael Giles, Secretary Peter Rooney, Jr., Immediate Past Chair Cheryl H. Cohen, MBA, FHFMA J.D. de León Victor D. DiSanto Lenore C. Ford Ezequiel Garcia Laura Coti Garrett, MS, RDN Lisa J. Meyers Suzann Rizzo Elizabeth Stamler Bhavna Tailor Ex-Officio Members Joseph S. Roth, President and CEO Elisse E. Glennon, VP/Chief Administrative Officer & Executive Director, Foundation

I’m proud to share 613 people had the opportunity to ring in the New Year with their families because of the transplants they received from generous organ and tissue donors in 2016. That’s the greatest number of lives saved in a year since our organization was founded. The power of one person to save many is exemplified in our cover story about Patti Jackson and her daughter, Zoë Gina Jackson, a 13-month-old who gave the gift of life to three other children (page 8). We are also seeing an increase in health restoring tissue grafts, with 55,000 instances of bone, skin, heart valve and vein donations in 2016. It was an honor to host Australian tissue recipient Turia Pitt, whose life was saved by dozens of American skin donors, at our headquarters recently where she met team members responsible for tissue recovery (page 5). Thanks to all who have joined us on this life-saving journey. We simply could not do it without the support of hundreds of volunteers who give thousands of hours of their time at our 5K Celebration of Life (page 6 ) and through other activities (page 15). We hope to see you at our 30th anniversary initiatives (page 15) planned throughout the year. Stay tuned!

Joseph S. Roth President and Chief Executive Officer P.S. Join me in extending a warm welcome to Nancy Bird, my new Executive Administrative Assistant and strong supporter of our mission, and to Michael Sheehan, our new Director of Finance. We welcome three distinguished individuals to our Board of Trustees, John Creel (Director, Transplant Marketing, Novartis Pharmaceuticals Corporation), Bruce Markowitz (President and CEO, HackensackUMC Palisades) and Ciro A. Scalera (Director, Governmental Relations, NJLECET). Finally, we wish our longtime Vice President of Finance/CFO Barry Newman all the best in his retirement.

INSIDE THIS ISSUE EDITORIAL TEAM Mara Barlow, Assistant Director, Marketing & Communications Jeanne Blanchard, Marketing Manager Alyssa D’Addio, Assistant Director, Philanthropy and Foundation Programs Amanda Damato, Marketing & Communications Assistant John Valentine, Marketing & Communications Coordinator Carolyn Welsh, Director, Organ Donation Services Teresa Akersten, Writer/Editor Emily Fitterman, Graphic Designer Photography for Cover Story by NB Productions Send comments to: editor@njsharingnetwork.org

CORRECTION In the Fall/Winter 2016 issue, photos in the story “NJ Hospitals: Our Partners in Saving Lives” were transposed.

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Sharing News Innovations How our state-of-the-art lab is helping highly sensitized patients I n the Community What you need to know about the 5K Celebration of Life C over Story Mother of organ donor finds comfort in sharing her daughter’s story S ocial Media Green bracelets, random acts of kindness and other ways to connect R aising Funds & Awareness Foundation Board installs new officers, welcomes new faces S ave the Date Donate Life Month, 30th Anniversary activities, golf outings

SHARING NEWS

A Common Purpose: Saving More Lives Donation Community Gathers at Annual Symposium, Association for Multicultural Affairs in Transplantation National Meeting Our 2016 multi-disciplinary Symposium on Organ and Tissue Donation, “What’s Growing in the Garden State,” held at the Hilton Short Hills in September, was attended by a record-breaking more than 300 healthcare professionals, educators, attorneys, faith-based leaders and volunteers. Morning plenary sessions included presentations by David Fleming, President and CEO, Donate Life America; John Creel, Director of Transplant Marketing, Novartis Pharmaceuticals (Presenting Underwriter); and Steve Adubato, Emmy Award-winning Anchor, PBS. In the afternoon, symposium attendees customized their experience, choosing from breakout sessions such as, “Hot Topics with the CEO,” “Youth Education,” “Enhancing Lives Through Tissue Donation” and “Volunteer Ventures.” In the days leading up to the symposium, NJ Sharing Network proudly hosted the Association for Multicultural Affairs in Transplantation (AMAT) 24th Annual Conference. The theme, “Celebrating the Gift of Life Through Cultural Empowerment,” was echoed over the three days. NJ Sharing Network staff participated in numerous breakout sessions and leaders in the transplantation community from throughout the country addressed conference participants.

What Symposium Attendees Had to Say… “The symposium is very informative and will enhance my practice.”

“As a nurse, this took away the myths.”

“Gave me something to think about and discuss with family.”

“I would very much recommend this event to a friend interested in volunteering.”

“I enjoyed listening to the donor family.”

Join Us This Fall for Our 2017 Symposium September 28 | 7:30am–4:30pm Newark Liberty International Airport Marriott—Newark, NJ

THUMBS UP PBS Anchor Steve Adubato, left, with Elisse Glennon, VP & CAO, and Joe Roth, President & CEO, at this year’s Symposium.

What Happened in Vegas… NJ Sharing Network staffers had a lot to say at the Association of Organ Procurement Organizations (AOPO) Council Meetings held this October in Las Vegas. Elisse Glennon, VP & CAO, and Amanda Abramo, Manager, Philanthropy and Foundation Programs, both presented at the Fundraising and Development Meeting for Organ Procurement Organizations (OPOs) hosted by the Nevada Donor Network. At the Financial Management Council Meeting, Mike Sheehan, Director of Finance, moderated a discussion on Philanthropy at OPOs. As one of the first OPOs in the country to start a foundation, NJ Sharing Network shared lessons learned about the many benefits philanthropy provides other than funds raised. At the 2016 Donate Life America Annual Meeting, also held in Las Vegas, Elisse Glennon joined Donate Life America President & CEO, David Fleming, as he presented an update of national initiatives. Elisse shared how these initiatives are positively impacting NJ donor registrations. Spring/Summer 2017

RAVE REVIEWS We heard great feedback from AMAT attendees, such as, “This is the best organization I have participated in. I am so impressed with NJ Sharing Network.”

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SHARING NEWS

Cover Story Update

Celebrating Joe’s Legacy Our spring 2011 cover story featured Alberta D’Addio, wife of organ and tissue donor Joseph D’Addio, with the NJ Sharing Network transplant coordinator who approached her family about organ and tissue donation and stood by the D’Addios during their darkest days. In those early months after Joe gave the ultimate gift, Alberta became an active volunteer with NJ Sharing Network. Receiving a heartfelt message from Joe’s kidney recipient, she said, was the first major milestone in her healing journey. A lot has happened since Alberta appeared on the cover of Circle of Life. Soon after, she joined the NJ Sharing Network Foundation Board, serving over her terms on the Executive, Scholarship and Acknowledgements and Recognition Committees. She traveled to Pasadena where she watched from the grandstand as her husband was honored with a floragraph on the Donate Life Rose Parade Float. Her daughter, Alyssa, an equally passionate advocate for donation, joined the team at NJ Sharing Network, and is now Assistant Director, Philanthropy and Foundation Programs. One of those programs, the Joseph D’Addio Fund, was established to spread educational outreach to multicultural communities. The Joseph D’Addio Fund holds annual birthday parties celebrating Joe’s life. Events have included a cocktail party and auction held at NJ Sharing Network’s headquarters as well as a bowling bash. At each event, guests sing “Happy Birthday” to Joe followed by an emotional balloon release. The next party will take place in the newly dedicated Landscape of Life Meditation Garden. Alberta now works at NJ Sharing Network part-time and says she loves every minute of it. “I am doing something I believe in while, at the same time, honoring my husband’s life,” says Alberta. Her story comes full circle on August 18, 2016 with the birth of Alyssa’s son, who was named “Joseph” in honor of his grandfather. “He is the new love of my life,” Alberta says. “Life is good and Joe is smiling from above.”

G-MA AND BABY JOSEPH Alberta calls her grandson “the new love of her life.”

Joe’s Gifts Touched Lives Across the Nation 27 states 89 recipients 2

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JUST DO IT Organ and tissue donor Joseph D’Addio is remembered each year with a birthday party which raises funds for multicultural awareness of organ and tissue donation. Spring/Summer 2017

A TOTAL OF 89 PEOPLE, ranging in age from 12 to 80, received tissue or bone donations, for surgeries such as ACL, spinal cord injuries and breast reconstruction, from Joseph D’Addio’s gift. 2

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SHARING NEWS

Beyond the Call of Duty NJ Sharing Network Foundation recognizes outstanding employee and dedicated Board Member NJ Sharing Network Foundation Immediate Past Chair Peter Rooney presented Stephanie Flynn, Senior Donation Resource Center Specialist at NJ Sharing Network, with the 2016 Spirit Award for her exceptional commitment to the organization’s life-saving mission during her 12 years of service. Thank you, Stephanie, for always going the extra mile for donors and their families! Previous Spirit Award winners are Jan Hines, David O’Hara and Missy Peck. Rooney also presented Board Treasurer and active volunteer, Dan Sarnowski, with the 2016 Chairman’s Award in recognition of “his exceptional leadership and enthusiasm in promoting organ and tissue donation.” Dan, who lives in Sparta, works tirelessly to honor the memory of the love of his life, Betsy Niles, an organ and tissue donor.

Get in the Loop Calling all knitters and crocheters—and anyone who wants to learn!

GIVING WARMTH 343 Wrapped in Love Shawls were delivered to donor family members in 2016.

Landscape of Life Meditation Garden Make time for a visit to our headquarters this spring.

Helping Make Critical Connections Hospital representatives from across the state joined us earlier this year for an educational program, “Organ Donation: Critical Connections Between Law & Medicine.” Our Hospital Services team and legal counsel provided a comprehensive overview of the various laws and regulations regarding donation. Donor families and transplant recipients also shared their personal experiences to help build further advocacy amongst our hospital partners.

Each month, shawls handmade by volunteers, as a tangible expression of comfort and compassion, are presented to family members of organ and tissue donors through our Wrapped in Love program. All we ask for is your time and compassion. NJ Sharing Network’s Jillian Padilla, the daughter of an organ donor, helps coordinate volunteers and leads multiple Knit Nights each month. Jillian teaches both knitting and crocheting to get newbies started. She’s also the person to contact if you or your group would like to contribute new shawls. To sign up for her newsletter, email jpadilla@njsharingnetwork.org.

How Do You “Like” This?

LAW & MEDICINE Attorneys, risk managers, physicians and administrators from more than 30 partner hospitals in our service area received valuable information on the legal aspects of donation. Spring/Summer 2017

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Congrats to our Social Media Team! NJ Sharing Network’s Facebook page was recognized with a Merit Award by The National Health Information Awards. The awards program, which honors high-quality consumer health information, is organized by the Health Information Resource Center (HIRC), a national clearinghouse for professionals who work in consumer health fields.

INNOVATIONS

Turia’s Tour of Gratitude Australian Tissue Recipient Visits NJ, Meets Tissue Recovery Team

When Turia Pitt was trapped in a fire in the Australian outback and burned over 65 percent of her body, there was no donated skin for skin grafts available in her country. Australian doctors turned to the Musculoskeletal Transplant Foundation (MTF), a leading U.S. tissue bank based in Edison, NJ, for help. MTF was able to provide skin from more than a dozen American donors to save the life of the athlete, who had been participating in a 100 kilometer ultra-marathon when she was caught in the firestorm. Five years and 200 surgeries later, Turia, now 29, visited the U.S. to show her gratitude

to those donors and help raise awareness about the life-saving and health-restoring gift of tissue donation. Turia was welcomed at NJ Sharing Network’s headquarters in December where she shared her inspirational story. “My burns were so severe that I was close to death and in desperate need of skin grafts,” Turia said. “I’m alive today because of the generosity of 16 Americans who donated the skin that saved my life.” Since her remarkable recovery, the former model and mining engineer has become an inspiration to others overcoming obstacles.

iPhone News

Donor Registrations Spike Thanks to Partnership with Apple

Apple just made it even easier to help save lives. Just tell Siri: “I want to register to be an organ donor.” Give it a try. Then ask Siri if she is an organ donor!

Thanks to Apple’s iOS 10 operating system, released last fall, iPhone users can link to Donate Life America’s national registry through the Health app. With a few taps, a heart icon indicating the user is a registered organ and tissue donor appears under his or her Medical ID, along with other critical health information, such as medications, allergies and blood type. The impact has been enormous. Before the launch, an average of 100 New Jersey residents joined the registry each day. The number spiked to 1,000 a day in the period after the iOS launch and remains at a steady 300 per day. Now that deserves a round of App-lause! Spring/Summer 2017

She travels the world as a humanitarian and motivational speaker, and has returned to competing in sporting events, completing the Ironman Triathlon World Championship in Hawaii in 14 hours. Turia was this year’s MTF honoree/rider on the Donate Life Float in the Rose Parade in Pasadena. (See cover story on page 8 for more on Rose Parade.) Follow Turia Pitt’s inspirational journey on www.TuriaPitt.com.

TISSUE DONATION

OUR RECOVERY STAFF was proud to meet with Turia Pitt, who represents the many people they help every day through their work recovering tissue.

TISSUE RECIPIENT Turia Pitt, left, shares a special bond with volunteer Pam Drozd, whose husband, Michael, helped 57 people with his gift of tissue donation.

DID YOU KNOW Tissue donation, the donation of skin, bone, tendons, ligaments, heart valves and veins, helps more than 1.75 million Americans each year. One tissue donor can restore health and provide healing to more than 75 people. Spinal grafts help patients with back injuries or severe back pain. Musculoskeletal tissue replaces bone, tendons and ligaments lost to cancer, severe trauma, degenerative joint disease, arthritis and other injuries and conditions. Skin can save the lives of burn victims, help with breast reconstruction following mastectomy, and serve as a wound cover for diabetic ulcers and other chronic wounds. Courtesy of Musculoskeletal Transplant Foundation

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For a High Risk Heart Transplant My Donation Connection Patient, the Wait is Over Veronica Horvath, daughter of an organ donor, Volunteer and Communications Coordinator, NJ Sharing Network

CHRISTMAS MIRACLE Heart recipient Linda Gearty, center, came home from the hospital just in time to spend the holidays with her family. After being hospitalized at Newark Beth Israel Medical Center for 157 days, heart transplant recipient Linda Gearty returned home on Dec. 23, 2016. It was my “Christmas miracle,” says Linda, who at 52 is resuming a normal life after years of limited activity. Linda’s bright future may not have been possible without diagnostic measures developed

“The waiting was the hardest part. Tougher than the recovery.” for the first time by the Transplant Laboratory Team at NJ Sharing Network. She was considered a “highly sensitized patient,” one that is more difficult to match and is commonly passed up for a transplant. Here, Dr. Prakash Rao, Vice President of Diagnostics & Research Operations and Director, Transplant Laboratory, explains… “These patients usually exhibit a large number of donor specific antibodies, and are considered as too risky to transplant based on a positive flow cross-match test. However, we hypothesized that if the positive cross-match test was being caused by non-harmful antibodies to the donor, the transplant could be safely performed. We have invented a reagent that allows us to characterize the antibodies with great accuracy. For the first time in the history of modern

transplantation, we have facilitated safe and successful transplants in roughly 20 recipients who had been passed over, or ran the risk of being considered too risky to transplant, because of the positive cross-match test.” Linda knew something was wrong with her from the time she was a teenager. There were decades of doctors, tests and misdiagnoses before she had a name for her condition: hypertrophic cardiomyopathy. Her world got smaller and smaller so gradually she almost didn’t realize it was happening. “This past summer, I couldn’t really do anything. I would get up to make a sandwich and I would have to lie back down,” she says. In order to be a candidate for a heart transplant, she would need to regain some strength and put on weight. Then there was the issue of antibodies, which made her a difficult patient to match. “The waiting was the hardest part,” she says. “Tougher than the recovery.” What is Linda looking forward to most? The little things. Visiting her three children at their colleges. Driving herself to the grocery store. And walking her dog around her Mendham neighborhood. “We are presenting our data in national and international conferences, and it is our hope that this will become standard practice in other OPO laboratories and transplant programs. The benefits of this test could be huge, and in theory we could facilitate safe and successful transplants in even the most highly sensitized recipients like Linda,” concluded Dr. Rao. Spring/Summer 2017

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My father, Richard, was the apple of my eye. He was my class dad and softball coach, and we loved to fish together. I was only 8-yearsold when I lost him after a tragic accident at a construction site. My parents had discussed organ donation and my mother knew my father’s wish was to be a donor. His generous gifts, both kidneys and liver, would save the lives of three others. In college, I was all set to go the corporate route. But everything changed when I interned with a nonprofit organization and realized I wanted my work to be meaningful. I’ll never forget receiving a call for an interview at NJ Sharing Network, the organization that did so much for my family during our time of need. I knew this is where I belonged. Because of my personal experience, I can identify with every donor family in some way, especially families with young children. I am so thankful I can help others through the grieving process and share with them the healing power of getting involved as a volunteer. So many things need to happen perfectly in order for donation to be possible, and it makes me incredibly proud to know my dad was able to do that. I still have to pinch myself that I actually work here.

Interested in volunteering? There are a variety of opportunities to choose from based on your interests. We are also growing our Donate Life Regional Groups across the state to advocate for organ and tissue donation. For more information, please contact Veronica Horvath at 908-5165637 or vhorvath@njsharingnetwork.org, or visit www.NJSharingNetwork.org/volunteer.

IN THE COMMUNITY

5K Makes Great Strides for Donation Thank you to all who made 2016 the best year ever for our 5K Celebration of Life. With the generous support of our sponsors, more than 300 teams and hundreds of individuals, we raised more than $1.2 million to support our life-saving mission. Here, get to know a few of our teams and volunteers who make it all possible: TEAM ONE LOVE Through organ donation, Dr. Jamila Irons-Johnson, a Hillsborough psychologist and mother of two young children, saved the lives of six people when she passed away following a ruptured aneurysm in 2013. Jamila’s lung transplant recipient, Janice McNamara, has become very close with Irons-Johnson’s mother, Janice Campbell. With Team One Love, the two women were joined by family and friends to celebrate Jamila’s legacy and her generous nature.

TEAM JILL ANN SZALONY Jill Szalony, wife and mother of three from Glen Ridge, had been suffering from heart issues for many years when doctors in December 2015 told her she needed a life-saving heart transplant. While she was on the waiting list, Jill and her family got involved by starting a 5K team. “When times were tough during my journey, I would turn to NJ Sharing Network… which proved to be more like joining a family that supported me every step of the way,” says Jill, who received her gift of life this past November and is feeling stronger with each day.

IRON KNIGHTS MOTORCYCLE CLUB

TEAM RON Since Ron’s passing in March 2011 at age 47, NJ Sharing Network has helped the DeModna family find light in the darkest of days. Through organ and tissue donation, Ron was able to give back to over 50 people in need. With Team Ron, family and friends turn their grieving into a celebration of his life.

Spring/Summer 2017

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With their leather jackets and shiny bikes, the Iron Knights from the Ironbound section of Newark have become a familiar sight at the New Providence 5K. Volunteers from the motorcycle club can be seen stationed along the course route, helping keep runners and walkers on track. They participate in honor of two members whose lives were saved by organ donation: kidney recipient Darius Webster of Newark and liver recipient Jack McDermott of Belleville. They also honor a member’s niece, Gina Andrade, who gave the gift of life.

IN THE COMMUNITY

WAY TO GO!

Our Top Fundraising Teams

1 T eam Luke $85,817

2 Max’s Mitzvah Movers $20,203

3 Run for Your Life $15,910

4 Team Courtney $15,660

5 Team Jill Ann Szalony $15,636

6 Missy’s Miracle $15,440

7 Team Andrew & Caroline $11,158

8 Just Do It in Celebration

Hey Amanda, Tell Us About the 5K The 5K never sleeps. But, when she is sleeping, Amanda Abramo, Manager, Philanthropy & Foundation Programs, says she often dreams about event day. “Luckily the reality is always better than the dream,” she jokes. Amanda, who will be behind-the-scenes making sure things run smoothly, took a quick break from preparations to answer questions about our signature event: What’s new for 2017? This year’s 5K Celebration of Life will be held on three consecutive months at three distinct locations: April (Paramus), May (Long Branch) and June (New Providence). The momentum and the excitement is going to be threefold! A Long Branch location? Is that also new? Yes! We are excited to welcome our Jersey Shore supporters to the Great Lawn at the Ocean Promenade in Long Branch, where the course will be USATF certified. We will be walking and running with views of the beach. Any other major changes? There will be staggered start times for runners and walkers. This will help avoid congestion and should make for a better experience overall. We also added a Fun Run to our Paramus location. Who participates in the 5K?

of Joe D’Addio $10,833

9 Team Ron

49%

$9,595

10 Live Like BJ $9,480

24%

donor families and friends

hospital, education and corporate partners

18%

transplant recipients, living donors and their families

community advocates

What if I’m not a runner or can’t walk a 5K? The 5K Celebration of Life requires over 500 volunteers and more than 3,000 hours of service. We start recruitment in January to ensure we have enough helping hands! You can volunteer on your own or as a group, and even get community service hours. We need volunteers to work water stations and food tents, serve as course marshals, supervise Kiddie Village and help out in our family services tent. And, don’t forget, you can simply come cheer on the crowd and enjoy the festivities. It seems like you have it all figured out by now… Well, one year we forgot to order safety pins for the bibs (one of the many minor details with a major purpose). The day before the 5K, we visited just about every dry cleaner and craft store within 20 miles. Of course, those are learning experiences and now we order safety pins in bulk! Once the three events are over, do things slow down? Even before the 5K campaign ends, we are already busy securing event locations and dates, and building out the website for the next year. It is “5K season” all the time!

Join us at the 5K Celebration of Life in 2017! April 2, Paramus May 7, Long Branch June 4, New Providence See page 17 for details. Spring/Summer 2017

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COVER STORY

A Mother’s Enduring Love When Patti Jackson learned there was no longer hope for her daughter, she understood saying “yes” to donation meant her baby would live on in others.

atti Jackson watched excitedly from the grandstands at the Rose Parade in Pasadena for the Donate Life Float to come down Colorado Boulevard. Among the organ donors being honored on this year’s float was her daughter, Zoë Gina Jackson, who was just 13-months-old when she gave the gift of life. Her floragraph, an image created entirely of natural materials, captured the big brown eyes and chubby cheeks of the child who was known for her ability to light up the room. It was placed on a sail with other honorees from New Jersey on the colorful float depicting a Polynesian catamaran. This spring marks six years since Zoë was crossing the road with her aunt and a cousin when she became the victim of an accident

saved a 2-year-old. Her liver went to a 1-yearold. And her kidney renewed life for a 14-yearold dependent on dialysis. “All her recipients are males, which is fitting,” Patti says. “Zoë was the biggest tomboy. She was so tough, jumping off of everything.” About a month after Zoë passed away, Patti reached out to each recipient with the assistance of the Family Services Team at NJ Sharing Network. She first heard from the heart and liver recipients. It was thrilling to learn they were healthy and doing well. A response from the kidney recipient came about two years later, and she was surprised to discover the boy, Abel Montesino, and his family also lived in Newark. When Abel and his family met with the Jacksons, they cried together and formed an

GRATEFUL Abel Montesino, dedicating a flower for the Rose Parade Float, got a second chance at life thanks to Patti Jackson’s generous decision to have her daughter be an organ donor. Patti, right, has had three more children since Zoë passed away in 2011, including these brighteyed boys, and a daughter.

“We wanted something positive to come out of Zoë’s death. As a family we all decided donation was the best thing to do.” Patti Jackson, mother of organ donor involving police chasing car thieves. When it was evident there was no chance of her daughter surviving her injuries, she gave consent to donation. “We wanted something positive to come out of Zoë’s death,” explains Patti, a resident of Newark. “As a family we all decided donation was the best thing to do. I couldn’t imagine not letting her save the lives of others.” Indeed, Zoë’s gifts would give a second chance at life to three other children. Her heart

instant bond. Patti has remained in touch with Abel who has graduated from high school and is studying phlebotomy. He calls Zoë’s gift “a gift from God.” As a volunteer with NJ Sharing Network, Patti remains committed to keeping Zoë’s legacy of love alive. She has organized donor registration drives and spoken to numerous groups, including hospital staff. Doctors and nurses often only see donation from the perspective of transplant recipients, she says, Spring/Summer 2017

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THEME TROPHY WINNER The 2017 Donate Life Rose Parade Float, “Teammates in Life,” was awarded for excellence in presenting the parade’s theme, “Echoes of Success.”

COVER STORY

Spring/Summer 2017

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COVER STORY and it is important for them to hear from donor families. “Any way I can tell my story, I get out and tell it,” she says. Patti has also been faced with the difficult task of sharing her story with her three children born after Zoë passed away. At ages 4, 3 and 1, she admits they are still a bit young to understand what it means when they are told they have a sister in heaven. They recognize “Zo-Zo” in the many photographs displayed throughout their home. Her oldest son, Ameer, who is now 15, however, has loving memories of his little sister. “I remember Zoë as a little busybody running around the house with pretzel sticks in her hands. She would always come into my room and knock over CDs and video games,” he says. Ameer accompanied his mom to the Rose Parade where they joined other donor families and transplant recipients from across the country in celebrating the gift of life. He says now that he’s older he would like to get more involved with advocating for donation. “What I experienced in Pasadena was amazing. Meeting other families and exchanging stories was incredible,” he says. “I plan on starting a Donate Life club at my school and I plan on volunteering more.” The parade was just one more step in the long healing journey for Patti and her family. “We were all excited the morning of the

parade. As the float came by, New Jersey kidney recipient Dorothea Duffy started crying and then everybody started crying,” she recalls. “I love NJ Sharing Network. The organization has brought me peace in Zoë’s death.”

Patti Jackson’s trip to the 2017 Rose Parade was sponsored by NJ Sharing Network’s Employee Giving Campaign. Learn more about this year’s Rose Parade honorees from New Jersey on the following page.

SEEDS OF LOVE Patti Jackson and two of her sons helped put the finishing touches on Zoë’s Donate Life Rose Parade Float floragraph at a ceremony attended by her extended family and kidney recipient Abel Montesino held at NJ Sharing Network’s headquarters in November.

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COVER STORY

2017 Rose Parade Honorees Represent New Jersey Each year, the Donate Life Rose Parade Float provides the donation community with an opportunity to inspire millions of parade-goers and television viewers across America to register as organ and tissue donors. On January 2, 2017, three organ donors and a transplant recipient from New Jersey were among those honored.

FLORAGRAPH HONOREES

Zoë Gina Jackson

Patti Jackson and her son Ameer, sponsored by NJ Sharing Network, attended the Rose Parade to honor Zoë Gina Jackson. Zoë was only 13 months old when she passed away in April 2011, but her family called her an old soul. The lives of three boys were saved with her gift of donation, which was perfect because she was such a tomboy. (Read more about Zoë, starting on page 8.)

Floragraph of Donor Zoë Gina Jackson

Courtney Dayback The Dayback family, sponsored by Bridge to Life, attended the parade to honor their daughter and sister, organ donor Courtney Lynne Dayback. Courtney was a fun-loving and caring young lady. She was studying to be a special education teacher before passing away on September 15, 2008 from cardiac arrest. Courtney’s generous gift of life answered the prayers of seven families, saving seven lives.

Isak Anderson The Anderson family, sponsored by Dignity Memorial—New Jersey, traveled to Pasadena to honor their son, organ and tissue donor, Isak Anderson. Isak had a brilliant mind, and knew how to use it wisely. He was genuine, loyal and musical. Through his family’s journey with NJ Sharing Network, there is a new adjective describing Isak: heroic.

FLOAT RIDER HONOREE

Dorothea Duffy

Floragraph of Donor Courtney Dayback

Kidney recipient Dorothea Duffy, sponsored by NJ Sharing Network, was among the float riders representing the thousands of lives saved each year through donation. In 2010, Dorothea was diagnosed with an uncommon autoimmune disease which affected her kidneys. She was on dialysis and the waiting list for a kidney transplant for almost 4 years. In January 2014, Dorothea, at 60, was blessed with the long awaited kidney transplant.

Floragraph of Donor Isak Anderson Spring/Summer 2017

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SOCIAL MEDIA

Kindness is Contagious! How do you remember a boy who loved making people smile? The family of organ donor Christopher D’Amico, who died in a tragic boating accident on June 24, 2015, created “Kindness for Christopher” to honor his memory. The Facebook group with more than 14,000 followers inspires others to spread kindness and laughter on the 24th of each month.

family has since partnered with the family of heart recipient Emma Rothman. The D’Amicos contributed pajamas collected in honor of Christopher to Emma’s Closet, which provides toiletries and other needs to children hospitalized with heart conditions.

Go to www.Facebook.com/ KindnessforChristopherD to read stories and share your own random acts of kindness.

Christopher Sr. and Laura D’Amico spoke about their son’s gift of life at NJ Sharing Network’s 2016 symposium. The donor

KINDNESS ROCKS inscribed with inspirational messages, have been discovered around the world, from Alabama and Hawaii to Hungary and Kuwait to The Great Wall of China.

Follow Us! Did you know? Ali Niles, Team Captain of Betsy’s Dash and five-time winner of the 5K Celebration of Life, completed the New York City Marathon in just under three hours? Follow our social media pages for more of these inspirational stories, breaking news about donation and the latest on how you can get involved!

@NJSharingNetwork

@NJSharing

@NJSharingNetwork

@NJSharing

Love It or Hate It?

Whether it makes you laugh, cringe or shed a tear, there’s no denying the impact of the Coleman F. Sweeney video on millennial males and the national organ donation registry. The 3-minute PSA tells the tale of a Spring/Summer 2017

NJSharingNet work .org

quintessential jerk who, despite his many shortcomings, is a registered organ donor. Sigma Pi Fraternity helped launch the video last August and it went viral with the help of news coverage from Forbes, who named it a top ad of 2016. Within the first six days, the Sweeney video received more than 50 million views and the number of men ages 20–34 registered nationally as organ donors increased by 215%. Meanwhile, New Jersey saw the number of registered males ages 21–29 skyrocket. Search for “Coleman F. Sweeney” on YouTube and see how even the worst among us can save a life.

SOCIAL MEDIA

One Band, Many Bonds

We often hear stories about people connecting over NJ Sharing Network/Donate Life green bracelets. Here are some recent favorites. HI THERE, LOVE YOUR BRACELET Vinnie Buddle has been wearing a NJ Sharing Network bracelet on his right wrist for as long as he can remember. The words pressed into the rubber—“Donate Life”—first took on personal meaning when Vinnie’s father became a living kidney donor in 2002. Years later, he would find a soul mate thanks to the neon green wristband. In June 2013, Vinnie was bartending at the Parker House in Sea Girt when a group wearing the familiar bracelets caught his attention. Amy Buckiewicz and her friends, he would learn, had just run in NJ Sharing Network’s 5K Celebration of Life. As captain of Team Buck, Amy raises awareness about organ and tissue donation in memory of her brother, Dan, who helped more than 70 recipients through his gifts. “It’s kind of amazing looking back. That green bracelet really started our conversation,” says Vinnie, who now runs with Team Buck and has joined Amy in her

efforts. “I’m always proud to call her my girlfriend.”

IT’S ALL IN THE WRIST Stephanie Flynn, Senior Donation Resource Specialist, made two connections in one afternoon! First, a man grabbed her wrist and asked her why she was wearing the green bracelet. After she explained her relationship with NJ Sharing Network, he confided that his son was an organ and tissue donor. “I reached in my pocketbook and gave him a bracelet. After he put it on, he hugged me tight and started to cry.” Meanwhile, a man sitting nearby overheard the conversation. He shared with Stephanie the tragic loss of his niece and how she donated her corneas. When he asked her if she had any more bracelets, she presented him with the one from her wrist.

LATE NIGHT SIGHTINGS Look for the familiar neon green on The Tonight Show Starring Jimmy Fallon! Mike Warren, NJ Sharing Network Donation Resource Coordinator, recently met the show’s house band bassist, Mark Kelley of The Roots, and learned he wears a green bracelet in honor of a friend who was an organ donor.

AT THE LUNCH TABLE Heart recipient Sam Prince started middle school in the fall and has been making lots of new friends. Imagine his surprise when he asked a boy at his lunch table, where did you get the Donate Life bracelet you are wearing? “Some kid who got a heart transplant gave it to me on the pier in Long Branch over the summer,” he replied. Well...that kid...was Sam!

SERVING UP SMALL TALK Another heart recipient, Mark Meade, was having lunch at a diner with his wife, Terry, when they spotted a bracelet on their server’s wrist. They struck up a conversation with the server, Christine Archer, a living kidney donor, and as a result joined her as active volunteers with NJ Sharing Network. Spring/Summer 2017

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SOUL MATES Matching green bracelets sparked a lasting relationship between Vinnie Buddle and Amy Buckiewicz.

Do you have a green bracelet story? Share it on social media and tag #NJSharingNetwork

RAISING FUNDS & AWARENESS

Meet the New Foundation Board Officers

FOUNDATION BOARD OF TRUSTEES Standing, from left: Bhavna Tailor, Past Chair Peter Rooney, Jr., Elizabeth Stamler, Ezequiel Garcia, President and CEO Joseph Roth, Laura Coti Garrett, Victor D. DiSanto and Director of Finance Michael Sheehan. Sitting, from left: J.D. de León, Vice Chair Randi Geffner, Chair Marla Bace, Treasurer Dan Sarnowski, VP/CAO and Foundation Executive Director Elisse Glennon and Secretary, the Honorable F. Michael Giles. Not pictured: Vice Chair Philip S. Kolm, Lenore C. Ford, Cheryl H. Cohen, Lisa Meyers and Suzann Rizzo. The Foundation serves as the philanthropic arm of NJ Sharing Network, and its Board plays a critical role in inspiring people to get involved by raising funds, participating in events and educating others about organ and tissue donation. Each member of the Board brings a different perspective through his or her professional experiences and unique connection to donation. The Board kicked off 2017 by installing new officers and welcoming fresh faces.

Marketing executive Marla Bace, of Berkeley Heights, has stepped up from her role as Vice Chair into the position of Chair previously held by Peter Rooney. “It has been a pleasure working with Peter Rooney. He brought great heart to the role, opening every meeting sharing stories about patients on the waiting list as a reminder of why we do what we do,” says Elisse Glennon, VP and Chief Administrative Officer of NJ Sharing Network and Executive Director

of the Foundation. “Marla is also extremely passionate about our mission and has been an invaluable member of the Foundation Board since 2010. Her expertise in marketing, strategic planning, communications, fundraising, brand building and promotion is a tremendous asset to our organization.” Marla is currently employed by ADP as VP, Global Client Partnerships, and has worked as a senior-level business executive at several leading multi-national companies. “I am honored and excited to build on the work of past chairs, Peter Rooney and Donna Albanese-DeMair, while leading the implementation of new strategies we believe will strengthen our mission to save more lives,” says Marla. “Over the next three years, the Board’s focus will be to expand in three key areas: providing greater MARLA BACE, Chair, support to our Foundation Board of recipients and Trustees their caregivers to make sure they continue to thrive, expanding our partnerships with the medical community to better support our donor families and increase consent rates, and supporting the innovations of our worldclass Transplant Laboratory team to maximize the number of lives that can be saved.”

Welcome to New Foundation Board Members EZEQUIEL GARCIA of Newark worked in the Newark Public School System for 26 years as a teacher, bilingual coordinator, vice principal and principal. He is current president of the NJ Chapter of HOGAR CREA, a residential program of reeducation and rehabilitation of drug addicts. Ezequiel is married and is the father of three sons. His middle son, Reinaldo, became a tissue donor in 2011.

VICTOR D. DISANTO of Hillsborough has been actively engaged in Real Estate Appraising throughout New Jersey since 1985. He joined Schwartz, Sterling & Associates in 1996 and became a Member of Sterling DiSanto & Associates, LLC in 2002. He and his wife Patti became advocates for organ donation more than 10 years ago when their son received a heart transplant at the age of 12. Victor serves on the executive committee for Team Liberty and is a speaker for both high school and hospital programs. Spring/Summer 2017

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ELIZABETH STAMLER of Scotch Plains has worked as Assistant Superintendent, County of Union, Department of Weights and Measures, since 2010. She currently serves on the board for partner fund Hearts for Emma, participates with Team Liberty and is a speaker for our community programs. Elizabeth’s family has been touched by organ donation and transplantation many times, from both sides, over the last 30 years.

Join us as we celebrate 30 YEARS of saving lives.

th 0 3 Anniversary

Meet & Gre at Our Galaet

PBS Anchor St eve Adubato & NJT V Life & Living Host Joanna Gag is

It is a time for us to Look Back on what we have been able to accomplish together and to thank all of our incredible partners. It is also a time for us to Look Forward to think about what we want to accomplish in the years ahead.

Gala

There is always more work to be done, more lives to save, more ways we can honor those who gave. LIBERTY SCIENCE CENTER in Jersey City hosts an interactive Organ and Tissue Donation Exhibit and offers programs on kidney and heart transplants in its Live From Surgery series, opening a window into operating rooms.

Th urs da y No vem be r 9, 20 17 6:0 0p m– 11 :00 pm LIB ER TY SC IEN CE CE NT ER Jers ey City, NJ

For more information and Sponsorship Opportunities, please contact Alyssa D’Addio, Assistant Director, Philanthropy and Foundation Programs, at 908-516-5432 or adaddio@njsharingnetwork.org. www.NJSharingNetwork.org/Events

Volunteer Spotlight In early March, Trish Boyce and her husband, Howard, marked an anniversary, but it was not their wedding they celebrated. Over 18 years ago, Howard was suffering from polycystic kidney disease and needed a transplant. Trish made the courageous and selfless decision to donate one of her kidneys to save his life. The kidney transplant, which took place on March 3, 1999, was only the beginning of Trish’s generosity. She has volunteered her time with NJ Sharing Network to help save even more lives. As a speaker, she presents at Liberty Science Center, local hospitals and her church, Wesley United Methodist Church. With the support of the church, she knits shawls for the Wrapped in Love program. Trish and Howard lead Wesley Walkers every year at the 5K Celebration of Life. She has also counseled others who are considering living donation. Thank you for all you do, Trish! We are lucky to have you as a volunteer. Spring/Summer 2017

THANK YOU TO ALL OF OUR VOLUNTEERS

5,300 400

1,300

hours

speaking with hospital partners

volunteer hours completed in 2016

1,000

hours

at health fairs & donor drives

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educating high school students

300 speaking at

hours

community events

3,000

hours

volunteering at the 5K Celebration of Life

SAVE THE DATE

2017

JOIN US…in our mission to save lives.

April

is National Donate Life Month

Join thousands of businesses, hospitals, schools, community groups and elected officials across the nation in supporting organ and tissue donation and transplantation. Help bring much-needed attention to this critical issue.

JUNE th 26

TEAM LIBERTY 4TH ANNUAL GOLF OUTING

NJ National Golf Club | Basking Ridge, NJ Play 18 holes (1 organ donor can save 8 lives) with this group of athletes who support organ and tissue donation. Team Liberty is a program of NJ Sharing Network.

Visit www.NJSharingNetwork.org/DLM to download our Community Outreach Resource Kits.

Visit www.GoTeamLiberty.org to register

Why a Pinwheel? This year’s Donate Life Month symbol, the pinwheel, reminds us that we all have the potential to capture and pass on life, comfort and hope to others by registering as a donor.

AUGUST 1st– th 7

NATIONAL MINORITY DONOR AWARENESS WEEK

This observance honors the generosity of multicultural donors and their families, while also underscoring the critical need for people from diverse communities to register as organ and tissue donors. It is a time to promote healthful living and disease prevention to decrease the need for transplantation. Visit www.NJSharingNetwork.org/NMDAW

SEPTEMBER th 28

SYMPOSIUM ON ORGAN & TISSUE DONATION

APRIL st 21

Newark Liberty Int’l Airport Marriott Newark, NJ

NATIONAL BLUE & GREEN DAY

Each year, healthcare professionals, educators, attorneys, faith-based leaders and volunteers gather for a full-day, multi-disciplinary symposium. Learn about the critical role you can play in saving lives.

We encourage everyone to wear the colors of donation to show your support! Share your pics wearing blue and green by tagging us on social media or submitting them to Alissa Marie Treible, Marketing and Communications Coordinator, at atreible@njsharingnetwork.org. Spring/Summer 2017

Visit www.NJSharingNetwork.org NJSharingNet work .org

SAVE THE DATE

NOVEMBER th 9

OCTOBER th 16

30TH ANNIVERSARY GALA

GOLF CLASSIC

Liberty Science Center | Jersey City, NJ

Metedeconk National Golf Club | Jackson, NJ

Join us for an evening of dinner and dancing as we celebrate 30 years of saving lives.

Support donation with a fun round of golf. Enjoy brunch, cocktails, an award reception and prizes.

Visit www.NJSharingNetwork.org/Events

Visit www.NJSharingNetwork.org/Golf Presenting Sponsor:

CELEBRATION OF LIFE SIGN UP TODAY! www.NJSharingNetwork.org/5K Whether you participate in the 5K or the many other event festivities, join us for a fun-filled celebration including music, snacks, prizes and activities for all ages. Sign up for one or all three events in 2017! (Registration fees will apply)

APRIL 2

5K Walk & Fun Run Bergen Community College 400 Paramus Rd, Paramus 7:30am Event Begins 8:30am Fun Run, 10:00am Walk Presenting Sponsor:

MAY 7

5K Walk & USATF Certified Race Great Lawn at the Ocean Promenade 100 Ocean Avenue, Long Branch (North of Pier Village between the Ocean Place Resort and Rooneyâ&#x20AC;&#x2122;s Crab House)

7:30am Event Begins 8:30am Race, 10:00am Walk Presenting Sponsor:

Spring/Summer 2017

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JUNE 4

5K Walk & USATF Certified Race NJ Sharing Network Headquarters 691 Central Avenue, New Providence 7:30am Event Begins 8:30am Race, 10:00am Walk Presenting Sponsor:

NONPROFIT ORG U.S. Postage

PAID Union, NJ

691 Central Avenue New Providence, NJ 07974 800-742-7365 • 908-516-5400 www.NJSharingNetwork.org

Permit No. 931

NJ Sharing Network is a member of Community Health Charities

WHO WE ARE NJ Sharing Network is a non-profit, federally designated organ procurement organization (OPO) responsible for the recovery of organs and tissue for the over 4,000 New Jersey residents currently awaiting transplantation, and is part of the national recovery system, which is in place for the more than 120,000 people on waiting lists. NJ Sharing Network is a designated OPO by UNOS; accredited by AOPO, ASHI, AATB and CAP; and registered with the FDA and NJ State DOH. If you no longer wish to receive information from NJ Sharing Network, please call 908.516.5400.

In 2017, we are celebrating 30 years of saving and enhancing lives through organ and tissue donation and transplantation. Take the quiz at right to test your NJ Sharing Network knowledge! Turn to page 15 for details on our 30th Anniversary Gala planned for November 9 at Liberty Science Center and other opportunities to celebrate our anniversary. And, finally, if you are part of our history and have a story to share, we would love to reconnect with you. Please contact John Valentine, Marketing and Communications Coordinator, at jvalentine@njsharingnetwork.org.

BACK IN TIME NJ Sharing Network’s Transplant Laboratory team helps mark National Medical Laboratory Professionals Week in this photo taken circa April, 1995. Donna King, far left, currently serves as our Senior Laboratory Supervisor. Donna joined NJ Sharing Network shortly after the organization opened in 1987 and has been with us longer than any current employee. Also pictured are Tess Lewis and Rose Ann Melendez-Tavana (third and fourth from left), longtime lab employees. This year, National Medical Laboratory Professionals Week, which highlights the life-saving work of our laboratory, is April 23–29. Like us on facebook @NJSharingNetwork

POP QUIZ!

Match the Milestone to the Date Check the answer key below to see how well you did. Milestone Year 1. NJ Sharing Network Foundation established

2015

2. Inaugural 5K Celebration of Life

2008

3. O rgan and tissue donation exhibit opens at Liberty Science Center

2009

4. N J Hero Act mandates organ and tissue donation education for high school and college students

2011

5. R elocated to state-of-the-art facility in New Providence

2013

6. Landscape of Life Meditation Garden opens

2016

7. NJ Sharing Network pilots National Donor Registry

2005

8. R equest/Assured Option legislation requires hospitals to offer option of donation to families of potential donors

1992

9. N J Division of Motor Vehicles mandates information about organ donation be included in driver’s manual and on licenses

1987

1. 2005, 2. 2011, 3. 2013, 4. 2008, 5. 2009, 6. 2016, 7. 2015, 8. 1987, 9. 1992

It’s Our 30th Anniversary