Circle of Life Magazine: Fall/Winter 2016 by NJ Sharing Network

FALL / WINTER 2016 Volume 7 Issue 2

WHERE FLOWERS GROWâ&#x20AC;¦

SO DOES H PE A PUBLICATION OF

Welcome to the Landscape of Life Meditation Garden

JOE’S CORNER It’s an incredible time of growth here at NJ Sharing Network. In the last issue, we reported how 2015 was a landmark year for organ and tissue donation and lives saved through transplantation in New Jersey. Looking at the number of lives saved to date, 2016 is on track to be another banner year.

OUR MISSION

NJ Sharing Network is committed to saving and enhancing lives through the miracle of organ and tissue donation and transplantation.

We’re helping more people than ever to

BOARD OF TRUSTEES Bruce I. Goldstein, Esq., Chair Howard A. Nelson, Vice Chair Michael P. Hedden, Treasurer Bonnie Evans, Secretary Edward J. Florio, Esq. Marc H. Lory Anthony L. Marchetta Vito Pulito, Past Chair Nancy E. Shafer-Winter, MSN, RN, NE-BC, CPHQ Antoinette Spevetz, MD Timothy J. Touhey Charles G. Walker 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 Peter Rooney, Chair Marla Bace, Vice Chair Philip S. Kolm, Treasurer Randi Geffner, Secretary Cheryl H. Cohen, MBA, FHFMA J.D. de León Lenore C. Ford Laura Coti Garrett, MS, RDN Honorable F. Michael Giles Derlys M. Gutierrez, Esq. Lisa J. Meyers Yvonne Payne Anthony E. Pizzutillo Suzann Rizzo Dan Sarnowski Bhavna Tailor Ex-Officio Members Joseph S. Roth, President and CEO Elisse E. Glennon, VP/Chief Administrative Officer & Executive Director, Foundation Barry Newman, Chief Financial Officer

get a second chance at life.

We’re helping more people than ever to get a second chance at life. In the first quarter, new programs and collaborations with our hospital partners allowed us to break new records; resulting in an unprecedented 44 lives saved during a four-day period in March. Of course none of this would be possible without our donors. We are eternally grateful for their gifts. Groundbreaking research from our Transplant Laboratory—which will lead to even more lives saved—is being recognized and adopted nationally. With advances in stem cell research, 3D printing and other areas, we stand on the cusp of many promising innovations. Not to mention what you will soon be able to do from your smart phones (page 4)!

Our Foundation’s efforts to raise funds and awareness are stronger than ever. We are well on our way to achieving our goal of raising $1.8 million this year, through our 5K Celebration of Life, Golf Outing and other efforts. Many of you are holding special events throughout the year from a dance-a-thon to a lemonade stand (page 14). Our elected leaders are also acting as strong advocates for donation (page 7). Now the donation community has a place to call its own—the newly unveiled Landscape of Life Meditation Garden located at our headquarters. In our cover story, photographed in the outdoor sanctuary, we feature a donor family, a patient waiting for a transplant, a founding employee of NJ Sharing Network and others whose lives have been touched by donation (page 8). We hope you will make time to visit the garden, which will be open year round. It is indeed an incredible time here at NJ Sharing Network, and we are thankful for all of you who have joined us on this journey.

ON THE COVER: Chris and Carla Bautista, parents of organ and tissue donor Luke Bautista, wearing their 5K Celebration of Life Team Luke shirts.

EDITORIAL TEAM Mara Barlow, Assistant Director, Marketing & Communications Alyssa D’Addio Bialko, Assistant Director, Philanthropy and Foundation Programs Amanda Damato, Marketing & Communications Assistant

Joseph S. Roth President and Chief Executive Officer

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

INSIDE THIS ISSUE

1 4 6 8

Sharing News Innovations New test will help save more lives In Your Community Team Liberty rocks at the Transplant Games C over Story A walk through our Landscape of Life Meditation Garden

12 14 16

S ocial Media How do you express your support? R aising Funds & Awareness The many ways you are making a difference S ave the Date Symposium highlights

SHARING NEWS

Let’s Give a Round of Applause We’re making a difference throughout New Jersey and across the country

EDUCATING HEALTHCARE PROFESSIONALS about organ and tissue donation is an important part of what we do at NJ Sharing Network. This spring, Carolyn Welsh, Director, Organ Donation Services, participated in the 26th Annual Transplant Surgeon Designee Symposium for Chronic Kidney Disease Professionals held in Edison. Welsh gave a comprehensive presentation on the state of Organ and Tissue Donation in 2016, discussing everything from the critical role nurses play in referring patients who meet clinical triggers to what the hospital team can do to join our mission to save and enhance lives. “Organ donation is a rare opportunity. Less than one percent of all deaths meet the criteria for donation,” explains Welsh. “Our team and hospital partners have only one chance to get it right, so we are always thankful to be part of the education process.” The symposium was designed for healthcare professionals seeking to broaden their knowledge of renal and pancreas transplantation and provided initial and re-certification for Transplant Surgeon Designees according to the guidelines established by the Renal and Pancreas Transplant Division of Barnabas Health.

A COMMUNITY PARTNERS AWARD was presented to NJ Sharing Network for our partnership of over 20 years with the Raritan Valley (NJ) Chapter of The Links, Incorporated at their 30th Anniversary Celebration held in April. The Raritan Valley chapter of The Links, an organization for professional women of color, offers programs and services in Middlesex, Somerset and Union Counties in the areas of the Arts, Health and Human Services, International Trends and Services, National Trends and Services and Services to Youth.

THE OUTSTANDING CAREER of one of our dedicated leaders was rec-

Pictured at NJ Biz awards breakfast, from left, Ijeoma Okere, Maria Garey, Donna King, Dr. Prakash Rao, Julien Napoleon and Jeff DeBay. NJ SHARING NETWORK’S LABORATORY plays a critical role in our mission to save lives. Our ground-breaking research, which will help kidney transplant teams save more lives across the nation, was recognized at the 2016 Annual Meeting of the Association of Organ Procurement Organizations in Austin. The findings were presented by Dr. Prakash Rao, NJ Sharing Network Vice President of Diagnostics & Research Operations and Director of Transplant Laboratory. In June, NJ Sharing Network was honored for the first time with an oral presentation at the American Transplant Congress held in Boston. Dr. Rao was also nominated as a HealthCare Hero by NJBiz in the Innovations category, and was one of four finalists recognized at a recent awards breakfast held in Somerset. (See page 4 for more details.) Fall/ Winter 2016

ognized by the AFP (Association of Fundraising Professionals) New Jersey Chapter at the Excellence in Philanthropy 35th Annual Awards held in Edison in May. NJ Sharing Network Vice President and CAO Elisse Glennon, center, was presented the Robert J. Smythe Award for “Outstanding Professional Fundraiser” by Samir Elbassiouny, Vice President of Resource Development for the NJ Chapter, and Anne B. Bradley, 2016 committee member. Since starting at NJ Sharing Network in 2011, Glennon has introduced a very successful annual 5K Celebration of Life, built an organizational culture of philanthropy and helped change the conversation on fundraising in the organ and tissue donation community here in New Jersey and nationwide.

Be the Power of ONE One organ donor has the power to save up to 8 lives. One tissue donor can restore health to over 50 others.

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SHARING NEWS

Cover Story Update

Coming Full Circle A successful kidney transplant, the chance to meet her donor’s family, winning multiple medals at the Transplant Games of America— this is just some of what’s happened to Dorothea Duffy of Lincoln Park since she appeared on the cover of Circle of Life Magazine in the fall of 2013. At the time, Dorothea had been a dialysis patient for nearly four years. Her kidneys had failed due to an autoimmune disorder and, she was so ill at one point, she needed to learn to walk again. When she heard about NJ Sharing Network, she decided to get involved as a way of staying positive. She walked in the very first 5K Celebration of Life, organized 5K Team Dorothea and became a certified Volunteer Ambassador. A few months after the magazine came out, Dorothea received the call she had been waiting for—a kidney match was found! Her prayers for a second chance at life had been answered. “Everything changes. I feel stronger. I have the energy to do things,” she explains. “You get your life back.” In April, Dorothea had a special opportunity to thank the family of her donor, Ben Diamond, a two-year-old boy from Middletown who gave her the gift of life. The emotional meeting with Ben’s mother and father, Susan Callari-Diamond and Michael Diamond, was captured on camera by News 12 New Jersey.

A TOUCHING MOMENT Dorothea Duffy, left, with her donor’s mother and brother. “I know I am very fortunate because not every transplant recipient gets the chance to meet their donor family. It meant the world to be able to show them my gratitude in person,” she says. June was a particularly eventful month. Several members of the Callari-Diamond family joined Dorothea and her 5K Celebration of Life team for the walk in New Providence. Dorothea also traveled with Team Liberty to Cleveland to compete in the biennial Donate Life Transplant Games of America. She was shocked to bring home three medals: a gold in bocce and a silver and bronze in darts. “To tell people I won these medals after all I’ve been through, it’s incredible,” she says. Indeed, Dorothea has found a purpose in spreading hope to the more than 4,000 patients in New Jersey waiting for a transplant. She speaks regularly to groups around the state, most frequently at Mountainside Hospital in Glen Ridge where she received much of her care. “I came to NJ Sharing Network from the beginning when I was on dialysis and waiting, and then I received the transplant and had the unique opportunity of meeting my donor family,” says Dorothea. “I’ve just come full circle. It’s been an amazing journey.”

EXPRESSING GRATITUDE Kidney recipient Dorothea Duffy, right, united with the family of her donor Ben Diamond with the help of NJ Sharing Network.

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STRONGER TOGETHER (opposite page) Members of the Callari-Diamond Family joined Dorothea and her 5K Celebration of Life Team in New Providence.

SHARING NEWS

NJ Hospitals: Our Partners in Saving Lives increase enrollment in the donor registry and spreading the life-saving message of donation. Starting this fall, we will begin to implement the next phase of our HRSA initiative. We look forward to further success in working with our hospital partners. Honoring Organ Donors Flag-raising ceremonies are one of the many special ways NJ hospitals partner with us to help donor families honor their loved ones LOVED ONES of organ donor Baby Diego gathered for an and the beautiful gifts they emotional flag-raising at Newark Beth Israel Medical Center. have given. Family members and friends gather Our hospital partners across New Jersey around and help raise the NJ Sharing Network have gone above and beyond in demonstrating flag, which is often inscribed with personal their dedication to saving and enhancing lives messages. They may say a prayer, read a poem through organ and tissue donation. Together, or simply share a moment of silence. we have achieved national recognition from the More than 40 family members attended a U.S. Department of Health and Human Serflag-raising ceremony in honor of Baby Diego vices (HHS). at Newark Beth Israel Medical Center. His An incredible 76% of hospitals in our sermother, father, brother, grandparents and godvice area were recognized by the HHS in 2016, father took turns sharing stories and memories receiving more than 40 Health Resources and about how loving Diego was during his life. Services Administration (HRSA) Awardsâ&#x20AC;&#x201D;inThe family expressed that they were grateful cluding 17 Platinum Awards. This places us to have Baby Diego live on through his gifts among the top 6 Organ Procurement Organiand have found peace in the decision they made zations in the nation. about donation. Conducting awareness and registry camFor more information about the HRSA paigns. Creating displays at health fairs and awards or ways to honor organ and tissue blood drives. Organizing teams for the 5K donors in your hospital, please contact Celebration of Life. These are just some of the Jan Hines at jhines@njsharingnetwork.org or many ways our hospital partners are helping to 551-574-3090.

2016 5K Celebration of Life

AT A FLAG-RAISING CEREMONY in honor of German Tamay Caguana at Hackensack University Medical Center, family members held sunflowers, which are a symbol of the Power of One.

PARAMUS NEW PROVIDENCE LINCROFT A Huge Success Thanks to You! With over 380 teams and 10,000 participants, we are well on our way to reaching our $1.25 million goal. This yearâ&#x20AC;&#x2122;s top teams and individual fundraisers will be announced on Oct. 15. Make an online contribution at www.NJSharingNetwork.org/5K or mail to: NJ Sharing Network 691 Central Avenue New Providence, NJ 07974 Look for full 5K Celebration of Life coverage in our Spring/Summer 2017 issue!

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INNOVATIONS

Transplant Laboratory Develops Test That Will Lead to More Lives Saved Prakash Rao, PhD, MBA, FACHE, HCLD Using today’s testing methodologies, the presence of antibodies in a crossmatch test indicates that an organ will be rejected; therefore, the patient will not be transplanted. Current methodologies only allow for the detection of whether or

We have found a way to help the transplant team make better decisions about kidneys recovered for transplants. not antibodies are present in a crossmatch test, however, not all antibodies are created equal. Our team at NJ Sharing Network’s transplant laboratory has invented a new, more sensitive crossmatch test, the NJSN Assay, capable of distinguishing “harmful” versus “non-harmful” antibodies. Using this assay, NJ Sharing Network can notify physicians if a positive crossmatch is only being caused by “non-harmful” antibodies. The physician may then safely transplant the organ in the recipient, whom without the NJSN Assay would have not been transplanted. The

NJSN assay has the potential to significantly increase the number of transplants that can be safely performed, and therefore, save and enhance more lives. Roughly 18% of kidneys are currently discarded. One of the parameters to determine if a kidney will function optimally is histology, or the visualization of a piece of kidney tissue through a microscope. The NJSN transplant laboratory is one of very few that house a digital pathology system. Using this, the pathology process has been reduced from the earlier 14 hours to a 3-hour turnaround time for the evaluation of kidney biopsies. Our team has now incorporated the use of molecular profiling to further enhance the examination of kidney biopsies. This science is referred to as histogenomics. There is no room for error when deciding to move forward with the surgery and the medical teams need reliable information. This improved information helps the transplant team make better decisions about kidneys recovered for transplants. Kidneys which would previously have been considered unsuitable for transplant may now be used to save lives. Dr. Prakash Rao is Vice President of Diagnostics & Research Operations and Director, Transplant Laboratory.

iPhone News

Donate Life Registry? There’s an iPhone App for That Apple and Donate Life America have joined forces to make registering as an organ and tissue donor as easy as a few taps on your iPhone. When the new iOS 10 operating system is released this fall, iPhone users for the first time will be able to register as organ and tissue donors right from their Health app. Registration will be submitted directly to the Donate Life Registry managed by Donate Life America. An icon of a heart will appear below the user’s name and birthday in Medical ID, an area of the app which makes critical health information, such as medications, allergies and blood type, available to first responders in case of an emergency.

THIS IS BIG! APPLE’S iOS 10 operating system, due out this fall, will be connected to the Donate Life Registry. Fall/ Winter 2016

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John Hopkins Surgeons Make History With HIV-Positive Transplants While researchers knew transplantation could be successful between an HIV-positive donor and an HIV-positive recipient, an antiquated law made the practice a federal crime for decades. The ban on HIV-positive individuals becoming organ donors was reversed in November 2013 with the signing of the HOPE Act (HIV Organ Policy Equity Act), ushering in a new era where more lives could be saved and waiting lists shortened. As a result, surgeons at John Hopkins Hospital are believed to be the first in the world to have performed an HIV-to-HIV liver transplant and the first in the U.S. to complete an HIV-to-HIV kidney transplant. The surgeries, which took place earlier this year, involved one HIV-positive donor and two HIV-positive recipients. “Organ transplantation is actually even more important for patients with HIV, since they die on the waiting list even faster than their HIV-negative counterparts,” said Dorry Segev, an associate professor of surgery at Johns Hopkins University School of Medicine. Segev was instrumental in drafting the HOPE Act. Researchers estimate 500 to 600 potential organ donors who are HIV-positive could save more than 1,000 lives each year with organs that would previously have been discarded. NJ Sharing Network has begun working with transplant centers around the state to implement the HOPE Act.

INNOVATIONS

My Donation Connection JAN HINES

Friend of an organ donor, Assistant Director, Hospital Services NJ Sharing Network It’s something we all know is possible at NJ Sharing Network: The day may come when work and our personal life collide. This is the story of what happened to Jan as she shared with colleagues at a recent staff meeting. Day after day, we watch the dashboard and see the ever-changing numbers. They represent our goals and measure our performance, the difficult work we do. But behind each number is a story, and most often it is one of tragedy. We receive countless emails about potential donors. We take a quick glance at each one. It’s part of the job. But there may come the dreaded day when you recognize a name. The moment when something shocking catches your eye, because this time it’s personal: 64-year-old Asian female, pedestrian struck. Family at bedside, grave prognosis, sending transplant coordinator onsite to evaluate. Within a few moments, the phone rings. It’s my brother vacationing in Disney: “Did you hear about Ming’s mom?” His voice is shaking. Our families grew up together. We went to camp together, celebrated weddings and birthdays. This is surreal. I watch my phone closely for updates, an inside

look into those critical moments: 3:45 a.m. Morristown Medical Center update: Patient herniated. Transplant Coordinator to go on site. I decide I need to be the one to go, to let them know Grace is one of the few who can give life and live on through the most precious gift. I’m nervous as I walk into the ICU and see everyone. They are exhausted, heartbroken. Grace is surrounded by family, friends, grandkids, neighbors. It doesn’t look like her. Her face is swollen; her shaved head reveals the failed attempts to save her. Yesterday, life was normal. This morning, it’s changed forever. I spend time with the family before separating

I decided I need to be the one to go, to let them know Grace is one of the few who can give life and live on through the most precious gift. a few in a private room. They know what I do. I bring up the options, explaining the uniqueness of the gift. I give them time, no pressure. There is silence. They translate to their father in Mandarin. “Yes, okay. We will consent.” NJ Sharing Network’s transplant coordinators are mobilized. Paperwork is completed. Testing is ordered and the process has begun… All I could think was, “Please, God, let these organs be viable. Please don’t let this all be in vain. Let something good come from this.” The text: “It’s going to be a tough share.” Those words were difficult to digest. But I knew the team was doing everything possible.

CLOSE TO HOME The writer’s family grew up with organ donor Grace, center, and her family. Fall/ Winter 2016

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NJ Sharing Network is proud to be hosting the Association for Multicultural Affairs in Transplantation (AMAT) Annual Conference, “Celebrating the Gift of Life Through Cultural Empowerment,” September 27–30. Hear from leaders within the field of organ and tissue donation and transplantation at AMAT’s 24th Annual Conference, which focuses on the multicultural perspective. All our hospital partners and other healthcare professionals are invited to attend. (AMAT membership is not required.) Our symposium begins immediately following the close of this national meeting. For more information and to register, visit www.AMAT1.org.

Three people got the call that weekend, two lung recipients and one liver. A match had been found, their second chance was now. My dad’s church hosted Grace’s celebration of life. A NJ Sharing Network flag was displayed with messages in English and Chinese, green bracelets adorned the audience. Grace’s gift was shared with everyone and I felt such pride for all that flag represented, hope in a time of such darkness and loss. So I share this story to show how the dashboard is a mere representation of light and hope when we are in the midst of unspeakable grief. It is a privilege to be a part of the sacred moments surrounding death, and it’s an even greater privilege and honor to know we hold something so powerful, so miraculous—we hold the continuation of life.

IN THE COMMUNITY

Celebrating a Second Chance at Life Team Liberty, a program of the NJ Sharing Network, sent more than 50 residents from the tri-state area to Cleveland in June for the Transplant Games of America. The biennial multi-sport festival honors those who gave the gift of life and celebrates those who received a second chance at life thanks to organ and tissue donation.

PATTI DISANTO, HILLSBOROUGH RESIDENT, mother of heart recipient Joseph DiSanto, and co-manager of Team Liberty accepted the Team Manager of the Year Award for all of her hard work overseeing Team Liberty with her co-managers, Michael DiPiano, Michael Strusiak and Michele Dabal.

The next Transplant Games will be held in 2018. For more information about joining Team Liberty at the games or other events held throughout the year, visit www.GoTeamLiberty.org.

MEMBERS OF TEAM LIBERTY brought home 75 medals in everything from basketball, bocce and ballroom dancing to tennis, badminton and darts at the 2016 Donate Life Transplant Games of America.

AMONG THE COMPETITORS was heart and liver transplant recipient Keath Gerald, 22, of Plainfield, who celebrated the one year anniversary of his double-transplant this August. Gerald (far right) demonstrated the ability to live an active, healthy life post-transplantation by winning an incredible seven medals in swimming and softball throw events. Fall/ Winter 2016

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NJ SHARING NETWORKâ&#x20AC;&#x2122;S Alida Sandoval and transplant recipient Mike Strusiak earned a medal in their dance competition.

IN THE COMMUNITY

NJ Legislators Voice Support for Donation and Transplantation

2016 Medal Count Team Liberty brought home an impressive 75 medals.

33 Gold 29 Silver 13 Bronze

NJ Sharing Network is grateful for the support of our elected leaders during National Donate Life Month and year round. While visiting NJ Sharing Network during National Donate Life Month in April, State Senate President Stephen Sweeney emphasized the importance of raising awareness about organ and tissue donation and transplantation in order to close the gap between the number of available organs and the more than 5,000 residents currently on the waiting list. “Our goal should be making sure that every-

one who needs an organ to live a healthy and fulfilling life has a real chance at getting what they need,” Sweeney said, applauding the efforts of NJ Sharing Network. “We can make a real difference.” At the gathering, Miss Cape May County, Devon Vanderslice, also spoke about donation, the cause she advocates for and her platform issue when she competes in pageants. Vanderslice was a close friend of the late Cara McCollum, the former Miss New Jersey who became an organ donor after she passed away in February 2016 following a car accident.

Advocates for Awareness

Here are some highlights: Michele Dabal, liver recipient 4 Gold (cycling, tennis singles and doubles) 1 Silver (basketball) Dorothea Duffy, kidney recipient 1 Gold (bocce) 1 Silver (darts cricket) 1 Bronze (darts 501) Matthew Felix, liver recipient 1 Gold (5K) 5 Silver (swimming, basketball, track and field) Ezequiel Garcia, father of organ donor 1 Gold (5K) Keath Gerald, heart and liver recipient 5 Silver (swimming, basketball) 2 Bronze (swimming, track and field)

From left, State Senate President Stephen Sweeney, NJ Sharing Network Vice President and CAO Elisse Glennon, Miss Cape May County Devon Vanderslice, NJ Sharing Network Board Chairman Bruce Goldstein, and President and CEO Joe Roth.

Jenny Godnick, living donor 1 Gold (cycling) 1 Silver (5K) Missy Rodriguez, liver recipient 3 Gold (tennis singles, doubles and mixed doubles) Emma Rothman, heart recipient 1 Gold (bocce) 1 Silver (basketball) 1 Bronze (cornhole) Janet Saulter-Hemmer, living donor 1 Gold (swimming) 3 Silver (swimming, bowling) Christine Scarano, cornea recipient 6 Gold, 1 Silver, 1 Bronze (swimming)

Assemblyman Declan J. O’Scanlon Jr. presents a proclamation issued during National Donate Life Month to NJ Sharing Network Vice President and CAO Elisse Glennon at a ceremony held at Riverview Medical Center in Red Bank. Fall/ Winter 2016

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Assemblyman Robert Auth (R-39), left, and Sen. Gerald Cardinale (R-39) show their support at the 5K Celebration of Life held in Paramus in April.

COVER STORY

“Where Flowers Grow… So Does H pe”

—Lady Bird Johnson

Welcome to the Landscape of Life Meditation Garden,

• Gather with loved ones for opportunities for reflection. • Spend a moment alone surrounded by nature.

a special place for those whose lives

• Meditate to the soothing sounds of running water.

have been touched by organ and

• Dedicate a stone to be placed throughout the garden in honor or in memory of someone special.

tissue donation and transplantation.

In celebration of the garden opening this summer, we invited members of the donation community for which this garden was created to have their photographs taken among the flowers and share their stories of hope.

This quiet sanctuary offers many ways to honor, to remember and to give hope: Fall/ Winter 2016

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COVER STORY

Chris & Carla Bautista Parents of donor Luke Bautista It’s hard to imagine how parents would find a sense of purpose so soon after losing a child. Carla and Chris Bautista of Wall have managed to make it through the past few months by knowing their 15-year-old son, Luke, helped save many lives through the gift of donation, including that of a teenage boy who received his heart. “Donation has brought purpose and a little bit of meaning to what was otherwise very senseless,” says Chris. “Telling our story, whether oneon-one or speaking in front of large groups on behalf of NJ Sharing Network, we see the impact of Luke’s generous gifts as exponential. Countless family members, friends and even complete strangers have registered as organ and tissue donors as a result of hearing his story.”

“I feel the closest to Luke in nature. If this garden brightens people’s day, that’s part of what he was…Luke was this special bright light.” Carla Bautista

Gregory Brown

The act of donation personifies the loving and giving person Luke was, the Bautistas said during their first visit to the Landscape of Life Meditation Garden. Luke loved to be in nature, always stopping to pick a flower or admire a beautiful view.

“Staying positive is in my nature, but it also doesn’t hurt to have the right people around you to lift you up.”

Waiting for Kidney Transplant Gregory Brown doesn’t let dialysis stand in the way of doing the things he loves. At 43, the Clark resident finds himself waiting for a life-saving kidney for the second time. He received his first transplant 10 years ago when he experienced kidney failure due to hypertension, a common ailment among young African-Americans. Gregory continues to work full-time for MackCali Realty Corporation as an office manager. Colleagues have walked with him in the 5K Celebration of Life in Paramus and many registered as organ donors after a presentation by NJ Sharing Network at their corporate offices. As he waits for the call, Gregory exercises regularly and takes short vacations scheduled around dialysis appointments. “You still have to live life,” he says. UPDATE: We are privileged to witness many miracles. Not long after Gregory posed for this photo, he received his life-saving transplant! Fall/ Winter 2016

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COVER STORY

“Every day, I wear my green bracelets, explaining my story and the work of NJ Sharing Network to everyone who asks.”

This summer, our Foundation awarded $5,000 scholarships to two high school graduates whose lives have been touched by donation.

Anthony Foti Cousin of organ donor Joey Ciccone Missy’s Miracle Scholarship Recipient (in honor of liver recipient Melissa Rodriguez) When Anthony Foti lost his beloved cousin Joey Ciccone, he was inspired by how, through the miracle of donation, Joey was able to save and enhance more than 100 lives. Anthony and his family soon got involved with NJ Sharing Network, forming Team Joe Joe, a top fundraising 5K Celebration of Life team. At Hanover Park High School, Anthony spread the word about donation among his classmates by selling NJ Sharing Network Donate Life bracelets. He is attending Rutgers University this fall where he will major in business and music education, and continue to raise awareness about organ and tissue donation.

Blake Rogolsky Daughter of heart recipient Betsy Niles Scholarship Recipient (in memory of organ donor Betsy Niles)

“I am inspired by my Dad’s story, the honorable donors, and the students who have told me they have changed their license to say ‘organ donor.’”

“His heart is here! Wake up!” Blake Rogolsky will never forget waking up to these words when her father received the call that would save his life and change the course of hers forever. Blake felt helpless while her father was on the waiting list, relying on a machine to pump blood through his body. But after his successful transplant, she found a calling in spreading the word about organ and tissue donation. Blake became a NJ Sharing Network Ambassador at age 13 and has shared her story at schools and synagogues. She founded the Donate Life Club at Marlboro High School, which is more than 60 students strong, and is Team Captain of MHS Donate Life Club, one of the largest 5K Celebration of Life Teams with 100-plus members. She is attending the University of Michigan where she plans to start or join a Donate Life club. For more information on NJ Sharing Network scholarship opportunities, visit www.NJSharingNetwork.org/scholarship.

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COVER STORY

OPENING DAY

From left, Chair of Acknowledgment and Recognition Committee Judge F. Michael Giles, VP and CAO Elisse Glennon, CEO Joe Roth, Board of Trustees Chair Bruce Goldstein and Foundation Board Chair Peter Rooney. About the Landscape of Life Meditation Garden • 8,200-square-foot perennial garden featuring butterflyfriendly plants • At dusk, water element illuminated by colored lights • Award-winning design by Muzi Li, Rutgers University landscape architecture student • Based on vision of our staff, donor families, recipients and volunteers, and spearheaded by the Acknowledgement and Recognition Committee • Constructed by Landscape Techniques, Inc. of Nutley • Special thanks to our landlord, Carrow Real Estate Services, LLC • Garden will be maintained partially through funds raised by our Employee Giving Campaign

Mary Ellen McGlynn Family Services Coordinator/ Founding Employee, NJ Sharing Network As they enter the Landscape of Life Meditation Garden, visitors will encounter a plaque inscribed, “An organ donor turns sorrow to hope, and a terrible loss becomes a gift.” The plaque is dedicated to Mary Ellen McGlynn, a founding employee of NJ Sharing Network and longtime Family Services Coordinator who retired this summer after nearly 30 years of service. “Mary Ellen serves as a shining example of how compassion and care have contributed to the success of our life-saving mission and she will be missed,” says Carolyn Welsh, Director, Organ Donation Services.

“I have been blessed to have met so many who believe life is a gift to be shared.”

“The resilience of the human spirit is demonstrated repeatedly by those who in the midst of their grief, choose to make the gift of life available to an unknown recipient,” Mary Ellen reflects. “How remarkable is that? The profound gratitude of the recipients of these gifts motivates them to seek ways to pay it forward and help someone else.” Fall/ Winter 2016

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Honoring Loved Ones in the Landscape of Life Meditation Garden The Landscape of Life Meditation Garden serves as an extension of the Landscape of Life Walls, where we honor organ and tissue donors, transplant recipients and members of the community, and also acknowledge contributions made in their honor or memory with a leaf ($5,000) or a butterfly ($10,000). The garden is lined with special plaques for organ donors and transplant recipients for whom a cumulative $50,000 or more has been received: In Memory of… Joseph D’Addio Courtney Dayback Kevin Gilbert Riley Kogen

Madeleine Midwinter Betsy Niles Anthony Rizzo

In Honor of… Sam Prince, Heart Recipient Melissa Rodriguez, Liver Recipient Emma Rothman, Heart Recipient For more information on the program, please contact Alyssa D’Addio Bialko at adaddio@njsharingnetwork.org or 908-516-5432.

SOCIAL MEDIA

How Do You Express Your Support? Whether you post, share, like, retweet, comment, or all of the above, thanks to social media, it’s easier than ever to spread the word about the gift of life. If you have a special way of expressing your support—such as the tattoos, face paintings and chalk art shown here—share them with us by using the hashtags #NJSharingNetwork, #CelebrateLife & #NJSN.

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@NJSharing

@NJSharingNetwork

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@NJSharing

SOCIAL MEDIA

Going Somewhere? Spread the life-saving message of donation around the world by posing with a NJ Sharing Network banner and posting photos to social media. Banners can be requested by emailing John Keating at jkeating@njsharingnetwork.org.

Give Me a Heart The Donate Life America “Give Me a Heart” Instagram campaign, which launched during Donate Life Month in April, features moving stories of heart transplant candidates and heart recipients. By tapping and holding the promoted posts, Instagram users are directed to RegisterMe.org where they can register as an organ and tissue donor. Go to @donatelifeamerica to see the powerful stories and images from the campaign.

Have You Seen Our New Wheels? We are big fans of our new NJ Sharing Network promotional van! The custom-wrapped van features organ donor families, grateful recipients and Ms. Pumps asking the critical question, “Are You an Organ Donor?” Look for the van at outdoor events throughout the state and follow it on Twitter at @NJSNVan.

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RAISING FUNDS & AWARENESS

Look at All You’ve Done! Many NJ Sharing Network supporters have made a difference by organizing their own fundraisers and awareness-raising activities. We are extremely thankful for the generosity of all these families and others who support NJ Sharing Network and our Foundation and help us save more lives through organ and tissue donation and transplantation.

Sam’s Lemon-Aid Stand Sam Prince, who is celebrating five years since his heart transplant, closed out Donate Life Month in April by raising a record-breaking $901 at Sam’s Lemon-Aid Stand at Gould School in North Caldwell. More than 100 supporters join Team Max’s Mitzvah Movers, started by Sam’s brother Max, at the 5K Celebration of Life.

The Barbara Mead Gift of Life Walk

Celebrating Tanya

Paige Brandimarto raised more than $7,000 with a walk she organized in honor of organ and tissue donor Barbara Mead, a close family friend. About 275 people participated in the walk, which was held in Owens Memorial Park in Williamstown. “I wanted to keep Barbara’s memory alive and bring all of her friends and family together for a fun day to remember her and bring awareness to organ and tissue donation,” says Paige. Funds raised support Paige’s NJ Sharing Network 5K Celebration of Life team, The Barbara Mead Gift of Life Walk.

A fundraiser for 5K Celebration of Life Team Second Chance was held earlier this year at the Alex and Ani Store in Ridgewood. The shop donated 15% of all sales to Team Second Chance, which walks in celebration of Tanya and the heart transplant that saved her life 21 years ago.

HOST YOUR OWN EVENT Contact Kelly Bonventre at 908-516-5959 or kbonventre@njsharingnetwork.org for details.

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RAISING FUNDS & AWARENESS

Riley’s Dance-a-Thon Riley’s Dance recently held a dance-a-thon and raised $4,662 in honor and memory of Riley Kogen, who helped save the lives of two women through her gifts. Riley’s Dance has established a crisis fund to improve the quality of life for transplant recipients and those in need of organ transplants.

Team Courtney Golf Outing Team Courtney recently held their 5th Annual Golf Outing in honor of organ donor, Courtney Dayback. The 5K Celebration of Life team raised $10,000 to support the life-saving work of NJ Sharing Network!

Forever Great & 58 The Joseph D’Addio Fund, celebrated the life and 58th birthday of its namesake with a Bowling Night held in June at Hanover Lanes in East Hanover. More than $7,700 was raised for the fund, which was created to help implement a three-phase outreach initiative for multicultural communities addressing the critical need and importance of registering to be an organ and tissue donor. Multicultural Outreach Initiative

Racing for a Cause In April, the Meadowlands Regional Chamber’s Emerging Leaders Network helped rev up business relationships while supporting the mission of NJ Sharing Network with Racing for a Cause, an afternoon of philanthropy, networking and fun at Pole Position Raceway in Jersey City.

“Your continued generosity supports multicultural outreach initiatives and education in NJ through a three-phase grant project.”

-Alberta D’Addio

COMPLETE!

Phase I: Market Research - Attitudes and perceptions on organ and tissue donation • Most Hispanics in NJ have limited knowledge about organ donation. • Many are unaware because they avoid the subject due to fear and superstition. Motivating Factors

We don’t want to talk about death.

• The idea of saving a life is a huge motivator. • Understanding that there is a real need.

Relating

to other familie s gets otionall y involv ed to want to help.

see me to ing, ivates dy It mot who was e. ne e lif someo able to liv now

Top Messages for Hispanics • ONE organ donor saves up to 8 lives. • ONE tissue donor can enhance over 50 lives.

My fear is that I don’t know enough.

me em

Eat Wings, Raise Funds

• Every day 22 people die waiting for an organ transplant.

5K Team Artie’s Partie helped raise funds by partnering with Buffalo Wild Wings in Princeton. When guests presented a special coupon, the restaurant donated 15% of the bill to their 5K Celebration of Life team. Artie’s Partie was formed in memory of organ donor, Artie, whose gift saved three lives.

• Donation is considered only when all possible efforts to save a life have been made and the person has died. • 122,000 people in the U.S. are waiting for organ transplants.

Phase II: Gain Insight - Development of a strategic and promotional plan

PLANNED

FOR 2016

• Partner with an expert consultant in Hispanic marketing to develop effective messaging. Phase III: Hispanic Promotion - Translation and implementation

PLANNED

FOR 2017

• Develop promotion to communicate positive stories and educate on organ and tissue donation. Your support saves lives and continues Joe’s Legacy!

JUST DO IT!

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SAVE THE DATE

2016

JOIN US…in our mission is to increase the number

SEPTEMBER th 30

SYMPOSIUM ON ORGAN & TISSUE DONATION

Hilton Short Hills—Short Hills, NJ Do you know you have a critical role to play in saving and enhancing lives through organ and tissue donation and transplantation? We hope to see you at our annual multi-disciplinary symposium for healthcare professionals, educators, attorneys, faith-based leaders and volunteers. You will gain knowledge, share experiences, meet members of the transplant community and learn about innovative and best practices.

STEVE ADUBATO returns as our symposium Keynote Speaker in 2016.

OCTOBER th 6

ORGAN DONOR ENROLLMENT DAY

www.NJSharingNetwork.com/symposium

Join the New York City campaign and encourage family and friends to visit www.NJSharingNetwork.org and register as organ and tissue donors.

SYMPOSIUM HIGHLIGHTS 7:30-8:30 am Registration & Breakfast Keynote Address by Steve Adubato, PhD Emmy Award-winning Anchor Thirteen/WNET (PBS) and NJTV (PBS)

8:30 am to 4:30 pm Sessions Individual break-out sessions such as the following may be chosen on the day of the event: •S tart to Finish: Organ & Tissue Donation Overview fulfills Board of Nurses contact hour. •C ommunity Partners Learn about volunteer opportunities.

18TH ANNUAL GOLF CLASSIC Metedeconk National Golf Club— Jackson, NJ Our annual golf outing will take place at Metedeconk National Golf Club, nestled in one of the highest points of Central Jersey in the Pinelands. The day includes brunch, a cocktail and awards reception, tricky tray, silent and live auctions and prizes. Visit www.NJSharingNetwork.org/golf or contact AAbramo@njsharingnetwork.org

•D onor Family & Recipient Workshop How to draft a letter to your donor family or loved one’s recipient(s) and create a quilt square to honor your loved one. •N ew in 2016! Social Media Outreach Help spread the word about donation.

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SAVE THE DATE

of lives saved and enhanced through organ and tissue donation and transplantation.

NOVEMBER th 11 – th 13

2017 JANUARY

NATIONAL DONOR SABBATH

Observed annually two weekends before Thanksgiving. Faith leaders from many religions, donor families, transplant recipients, and donation and transplantation professionals participate in services and programs to educate the public about the life-saving and healing gifts passed on through transplantation.

ROSE PARADE

The 2017 Donate Life Rose Parade Float, “Teammates in Life,” will once again travel down Colorado Boulevard during the 128th Rose Parade in Pasadena, Calif. Since 2004, the Donate Life float has served as a memorial to organ and tissue donors and a platform for donor families, living donors and transplant recipients to inspire the world to save and heal those in need through the gift of life. Watch on NBC at 11 am EST. (Please note because New Year’s Day falls on a Sunday, this year’s parade will be held on Monday, Jan. 2.)

To download our Faith-Based Outreach Resource Kit or request a speaker, visit www.NJSharingNetwork.org/ donorsabbath.

www.NJSharingNetwork.org/rose-parade

COAST-TO-COAST FRIENDSHIPS NJ Sharing Network sponsored the Mercado family to travel to California and participate in the 2015 Rose Parade. A floragraph of their daughter, Melissa, a donor, was beautifully displayed on that year’s Donate Life float. During their visit, the Mercados met Martha L. Alonso, the volunteer who decorated Melissa’s floragraph. They quickly connected and remained in touch. Martha (far right) traveled from California to New Jersey to participate in the 5K Celebration of Life in June with the Mercados on Team Butterfly.

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2017 ROSE PARADE—NJ HONOREES FLOAT RIDER

Kidney Recipient Dorothea Duffy Sponsor: NJ Sharing Network (See page 2 for story.)

FLORAGRAPH HONOREES Organ Donor Zoe Jackson Sponsor: NJ Sharing Network

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Organ Donor Isak Anderson Sponsor: Dignity Memorial

Organ Donor Courtney Dayback Sponsor: Bridge to Life

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 nearly 5,000 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.

Jersey City Mural Spreads Life-Saving Message

THESE CITY WALLS Renaissance Institute students, from left, Caron Maxwell, Ronaldo Bruno, Dimitri Moore, Almira Williams, Lavell Leak, Attrell Future and Yarimar Muniz, were inspired by their visit to NJ Sharing Network to create this “Donate Life” mural in Jersey City. One of the latest works of art to cover the colorful streets of Jersey City was inspired by organ donation! After a representative from NJ Sharing Network spoke at their high school earlier this year, a group of students from the Renaissance Institute visited our headquarters in New Providence. While touring our offices and state-ofthe-art laboratory, they discussed ways to get Jersey City more involved with raising awareness about organ and tissue donation and transplantation. The teens decided a great way to get the word out would be to paint a

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mural outside Hudson County Art Supply off of Newark Avenue. The design features two outstretched hands holding a heart that says “Donate Life,” butterflies which are symbols of new hope, and the message: “Give the gift of life. Become an organ donor.” Renaissance Institute is one of the many high schools NJ Sharing Network has partnered with to spread the life-saving message of donation. To request a speaker for your school or to arrange a visit to our headquarters for a fun, educational program, visit www.NJSharingNetwork.org/highschool.