CIRCLE LIFE A Publication for the Donation and Transplantation Community
of
2019 | Volume 10 Issue 1
EVERY BREATH THEY TAKE Life before and after transplant surgery connects three individuals through the #SaveNJLives campaign
GET INVOLVED
Transplant Games of America Coming to the Meadowlands
WHO
WE ARE
NJ Sharing Network is dedicated to saving and enhancing lives through organ and tissue donation and transplantation. We operate 24/7/365 with a team of highly trained and dedicated members on staff. Our Foundation is committed to increasing the number of lives saved through innovative transplant research, family support, public awareness and education about the life-saving benefits of organ and tissue donation and transplantation.
WE’RE HIRING! “It’s more than a job; it’s a calling. I wake up each day and know I’m on a mission to save more lives.” Tushar Patel, MS, CTBS Transplant Coordinator
To learn more, get involved and register as an organ and tissue donor, visit:
www.NJSharingNetwork.org
CIRCLE LIFE of
JOE’S CORNER I find it fitting that National Donate Life Month is celebrated in April. Spring—much like transplantation—brings with it new life. As I write, we are busy preparing for our second #SaveNJLives initiative for April. Our goal this year is to heighten awareness in regions across the state with the highest number of residents awaiting a life-saving transplant—and what better way to do so than over a slice of pizza or a cup of coffee (page 15)! In our cover story, we learn about the health and emotional challenges faced by those waiting from the perspectives of two double-lung transplant recipients and a transplant patient waiting who keeps positive through prayer and a strong support network (page 10). The numbers offer hope. In 2018, 678 life-saving transplants, including 141 from living donors, were made possible in the state, making it the fourth consecutive year with more than 500 transplants. We saw more hearts (79) transplanted than ever before and an unprecedented number of eye donors (826) gave the gift of sight. Turn to “Saving Lives by the Numbers” for the details (page 16). Innovations out of our state-of-the art transplant laboratory are making more transplants possible than ever before. Check out a timeline that highlights milestones and offers a glimpse of what’s on the horizon (page 8). Awareness is also on the rise. Last year, nearly 40 percent of those who gave the gift of life were previously registered as an organ and tissue donor. This speaks to the incredible job that our staff, working closely with our dedicated volunteers, has done to educate and inform the community (page 18). Wishing you a beautiful spring.
Joseph S. Roth President and Chief Executive Officer
BOARD OF TRUSTEES Howard A. Nelson, Chair Michael P. Hedden, Vice Chair Anthony L. Marchetta, Treasurer Bonnie Evans, Secretary Bruce I. Goldstein, Esq., Immediate Past Chair John Creel Edward J. Florio, Esq. Ciro A. Scalera Stephanie Schwartz, FACHE Nancy E. Shafer-Winter, MSN, RN Antoinette Spevetz, MD Charles G. Walker Ex-Officio Members Joseph S. Roth, President and CEO John Radomski, MD, Chief Medical Director Mark Zucker, MD, Advisory Board Chair
ADVISORY BOARD Mark Zucker, MD, Chair Donna Ciufo, DNP, RN, FNP-BC, NE-BC, CCRN Kristin Fless, MD, FCCP Stuart Geffner, MD, MS Michael Goldstein, MD Michael Gould, MD James Guarrera, MD Lou Jablonski Sarah E. Jensen, Esq. Kelly Lemon Scott A. Meyer, MD, FAANS Shamkant Mulgaonkar, MD Ronald Pelletier, MD John S. Radomski, MD Prakash Rao, PhD, MBA, FACHE, HCLD Christina W. Strong, Esq. Francis Weng, MD, MSCE Dorian J. Wilson, MD Joe Yaccarino, MBA Ex-Officio Members Joseph Roth, President and CEO Carolyn Welsh, VP and Chief Clinical Officer
2019 | Volume 10 Issue 1
Kudos to Our Magazine Team Circle of Life magazine received a 2018 National Health Information Award, honoring the nation’s best consumer health programs and materials!
CORRECTIONS We would like to acknowledge errors in the Fall/Winter 2018 issue. On page 10 of our cover story, Jason Ray’s transplant recipient is David Erving, not Irving. In the story on living donation, the daughter of transplant recipient Hayley Tsai is Jocelyn, not Joycelyn. The date for the 2019 5K Celebration of Life in Long Branch was listed incorrectly in the calendar. The event will take place on Sunday, May 19. We sincerely regret these and any other errors or omissions.
FOUNDATION BOARD Philip S. Kolm, Chair Randi Geffner, Vice Chair Dan Sarnowski, Treasurer Honorable F. Michael Giles, Secretary Arif Asif, MD, MHCM, FASN, FACP Chris Bautista Jane Buckiewicz Patrick Buddle, MD Cheryl H. Cohen, MBA, FHFMA Victor D. DiSanto Sandy Erwin Ezequiel Garcia Laura Coti Garrett, MS, RDN Paul Jova Debra L. Morgan, MHA, MSW, LCSW Ron Oswick Bernard Simon Elizabeth Stamler Bhavna Tailor Ex-Officio Members Joseph S. Roth, President and CEO Elisse E. Glennon, VP and Chief Administrative Officer and Executive Director, Foundation
EDITORIAL TEAM Laura Avello, Marketing and Communications Coordinator Mara Barlow, Assistant Director, Marketing and Communications Alyssa D’Addio, Director, Hospital and Community Services Jan Hines, Assistant Director, Transplant Community Relations Veronica L. Horvath, Marketing and Communications Coordinator Donna King, Senior Laboratory Supervisor Misty A. Marchioni, Manager of Administration and Regenerative Medicine Programs Amanda A. Tibok, Senior Manager, Philanthropy and Foundation Programs Teresa Akersten, Writer/Editor Emily Fitterman, Graphic Designer Send comments to editor@njsharingnetwork.org.
COVER STORY UPDATE
Honoring Donors, Celebrating Life On the cover of the Fall 2014 issue of Circle of Life magazine, the wife of an organ donor sits between the parents of a transplant recipient. The three had recently returned with Team Liberty from the Transplant Games of America in Houston where Mary DiNardo honored her husband, Marc, and Patti and Victor DiSanto watched their son, Joe, medal in three events after a long rehabilitation. The photo was taken at NJ Sharing Network’s headquarters when the DiNardo family was honored on the fifth anniversary of Marc’s heroic donation.
The Legacy of a Hero
awareness about donation. Membership has grown with more than 130 recipients, living It has been donors, donor family members and supporters 10 years since attending the 2018 Games in Salt Lake City. Jersey City Police Patti, along with co-managers Michael Strusiak, Detective Marc Michael DiPiano and Joanne Pinto, strive to have Anthony DiNardo, 750–1,000 team members at the Meadowlands. who was killed Michael DiPiano celebrated the 20th in the line of anniversary of his kidney-pancreas transplant on duty, saved three October 25, 2018. He has attended every one of lives as an organ the bi-annual Transplant Games of America since donor. But his 2004, as well as two World Games. legacy has not “I have met so many wonderful people— been forgotten. MARC ANTHONY recipients, living donors and members of donor The Jersey City DINARDO families—who have become friends and part of Police Department my extended family,” he says. “It’s a way to pay holds an annual tribute to my donor Sean and his family, and vigil where Marc’s wife, Mary, and their three honor him for all he has done for me and children, along with family and friends, my family through donation.” gather in his memory. Also present is For co-manager Michael Strusiak, a Marc’s heart recipient, Don Zolkiwsky, a kidney-pancreas recipient, the Games Vietnam veteran who shows his gratitude are also about honoring his donor angel, by giving Mary roses on the anniversary Kristen Theresa O’Hara. Michael has of his transplant, one for each additional competed in golf and track and field year made possible by the gift of life. events, and most recently in ballroom “Marc had a job where he saved people, dancing. He has given away the many and even after he died he still saved medals he has won to donor families people,” says Mary, who is active with the who may not know their loved ones’ Concerns of Police Survivors organization recipients. He also created the Wall of and encourages first responders who risk Honor at our headquarters where Team their lives every day to register as organ Liberty members may display their and tissue donors. “If I could get one medals. person to sign up, it’s the potential to save EACH YEAR Don Zolkiwsky, recipient of Marc’s heart, and “I hope the 2020 Donate Life Transplant eight lives.” his wife Deena attend a vigil with his donor’s family. Games bring more awareness to the Mary has not had a chance to attend tri-state area to get people to register as the Transplant Games of America since organ and tissue donors and as a result Houston, but is excited to be in the save more lives,” Michael says. stands when the Games come to the Meadowlands in 2020. “Since they are in our back yard, we wouldn’t miss them for the world,” she says. “Let’s celebrate the life Marc lived The Transplant Games and let’s celebrate the fact that he lives of America are coming on after his death.” and Michael DiPiano. The team brought home 66 medals from the multi-sport festival which celebrates the success of transplantation and honors organ and tissue donors. “My son was all about sports and was very physically fit before he needed a transplant. It has been incredible to see him compete across the country in the Transplant Games of America, as well as in the World Games,” says Patti. “Now we are thrilled to be hosting the 2020 Donate Life Transplant Games at the Meadowlands, which we are expecting to be the biggest and best attended Games ever.” Team Liberty, with athletes from New Jersey, New York and Connecticut, was founded in the mid-1980s and partnered with NJ Sharing Network in their shared mission to promote
to the Meadowlands!
Looking Forward to the Games in 2020 When the cover story ran in 2014, Patti and Victor served as co-managers of Team Liberty, along with Michael Strusiak
• Join Team Liberty • Get Involved • Become a Sponsor TEAM LIBERTY CO-MANAGERS From left, Patti DiSanto, Michael Strusiak, Michael DiPiano and Joanne Pinto.
2 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Learn more on page 25.
INSIDE NJ SHARING NETWORK
AWARDS + RECOGNITIONS
Scouts Honor
Leading the Way
Boy Scouts of America, Patriots’ Path Council will honor Joe Roth, President and CEO, at the Union County Lifetime Achievement Awards Dinner in May. The event recognizes outstanding citizens for their community service, as evidenced by their leadership and interests within the Union County community, and for their embodiment of the values of the century-old Scout Oath and Law in their personal and professional lives.
NJBIZ presented Elisse Glennon, VP and Chief Administrative Officer and Executive Director, Foundation, with a 2019 Best 50 Women in Business Award at a ceremony in March. Each year, the publication honors leading women business leaders who shape their organizations, industries and the economic landscape of the Garden State.
Foundation Chair Awards In recognition of exceptional leadership and enthusiasm in promoting organ and tissue donation, Foundation Board Chair Phillip S. Kolm presented this year’s Chairman Award to Bernard Simon. Bernard has served on the board for nine years and currently serves as chair of the Rose Parade Selection Committee. He frequently represents our Foundation Board at events and takes beautiful photos. Kolm also presented Hospital Services Manager Kelly Bonventre with the Spirit Award in recognition of her exceptional commitment to our Foundation and enthusiasm in promoting organ and tissue donation. Kelly supports our public education and community engagement efforts by leading the Sussex Donate Life Regional Group.
A Positive Impact Michele Dabal, Philanthropy and Foundation Programs Coordinator, received a 2019 Women of Excellence Award from the Union County Commission on the Status of Women. Michele, a liver transplant recipient and passionate advocate for donation, was honored in the Humanitarian Activities category. “These awards recognize the contributions made by women who make a positive difference in the quality of life for everyone in the county,” according to Freeholder Chair Bette Jane Kowalski.
CLINICAL LEADERSHIP
Over the past six years, NJ Sharing Network has seen record breaking numbers of lives saved and enhanced through organ and
Sharyn Sawczak has assumed the new role of Director of Clinical Practice and Innovation. Sharyn’s experience and proven success will allow her to further our organization’s mission with a focus on organ utilization, innovation pertaining to education and training, recovery and research. Sharyn, a registered nurse, joined NJ Sharing Network in 2006.
tissue donation and transplantation. “In an effort to continue on this positive path,” says Carolyn Welsh, VP and Chief Clinical Officer, “the organization has made strategic changes to the clinical leadership team.”
Justin Johnson has come on board as Director of Clinical Services, overseeing Transplant Coordinators and the Donation Resource Center, with a focus on donor management and authorization. Justin previously worked at LifeGift in Houston and has 12 years of experience in the field. He holds a Bachelor of Science in nursing and recently completed a Master of Science in Biomedical Science— Human Donation Science.
NJSharingNetwork.org • CIRCLE OF LIFE 2019 3
IN THE COMMUNITY
A NEW YEAR CELEBRATES NEW LIFE AT ROSE PARADE
Donate Life Float Connects Cooper University Health Care Surgeon to Donor Family
THE ULTIMATE GIFT Dr. John M. Porter, left, Director of the Cooper Center for Trauma Services, dedicated a rose to Floragraph Honoree Sean Clegg, who gave the gift of life at Cooper University Health Care. Dr. Porter attended the Rose Parade on New Year’s Day where he had the opportunity to thank the Clegg family (right) for Sean’s gifts.
Dr. John M. Porter has watched the Donate Life Rose Parade Float come down Colorado Boulevard in Pasadena, California on multiple occasions. But this New Year’s Day was special. Sean Clegg, one of 44 floragraph honorees from across the country, gave the gift of life at Cooper University Health Care, where Dr. Porter is Director of the Cooper Center for Trauma Services. Dr. Porter was asked to write a message on behalf of Cooper to be placed along with a rose on the float. “In my note, I thanked Sean for giving the ultimate gift of the holiday season, the gift of life,” says Dr. Porter, who also had the opportunity to thank Sean’s family in person at the parade. Prior to Cooper, Dr. Porter worked as a trauma surgeon at the University of Mississippi where he participated in a statewide collaborative with the area’s organ procurement organization. “As a trauma surgeon, one comes in contact with many potential donors,” Dr. Porter says. “We are always trying to save lives, but when we can’t, we can try and save more lives through organ and tissue donation.”
2019: The Melody of Life
2020: Power of Hope On January 1, 2020, the Donate Life Rose Parade Float will make its 17th appearance in the parade. The following honorees will represent New Jersey. Each New Year’s Day, the Donate Life Rose Parade Float at the nationally televised Tournament of Roses Parade brings attention to organ and tissue donation and transplantation to millions of viewers. In 2019, New Jersey was represented by floragraph honorees, organ and tissue donors Sean Clegg, Carrie Ellen Fisher and Dr. Randall Giles, as well as float rider honorees, liver recipient Jim Rhatican and heart recipient Emma Rothman. Donor families and honorees were sponsored to attend the multi-day festivities by NJ Sharing Network and our generous partners, Bridge to Life, Dignity Memorial and Hearts for Emma. 4 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Sam Prince Hope Wolf Heart Recipient, Organ and Tissue Donor, Float Rider Honoree Floragraph Honoree Sponsored by NJ Sharing Network Michael DiPiano Kidney-Pancreas Recipient, Float Rider Honoree Sponsored by Team Liberty
Love on Display
A Century of Excellence
Thank you to the University Hospital Liver Transplant Team for placing one of NJ Sharing Network’s Quilts of Love on permanent display. Squares on our Quilts of Love are created by the families of organ and tissue donors as a way to honor their loved one’s legacy.
NJ Sharing Network’s Hospital Services Managers celebrated our partners at the New Jersey Hospital Association (NJHA) 100th Annual Meeting and Awards Reception held in Princeton. Congratulations to the hospitals, healthcare facilities and individuals presented with awards for their outstanding commitment to healthcare.
Let Life Bloom From hosting registration drives to participating in our 5K Celebration of Life, our hospital partners work hard to promote organ and tissue donation. In 2018, 42 hospital partners were recognized for their efforts by the Health Resources & Services Administration (HRSA) in the Let Life Bloom campaign. Among them were Newark Beth Israel Medical Center (Platinum), St. Joseph’s Regional Medical Center (Platinum), and Robert Wood Johnson University Hospital Hamilton (Gold). Robert Wood Johnson University Hospital Hamilton St. Joseph’s Regional Medical Center
Newark Beth Israel Medical Center
NJSharingNetwork.org • CIRCLE OF LIFE 2019 5
IN THE COMMUNITY
On Our Bookshelves
VOLUNTEER SPOTLIGHT
New Heart, New Life
My ‘Donor Angel’
MICKEY + ME With his health restored, heart transplant recipient Mike Rizzo was able to return to one of his favorite places, Disney World.
Many transplant recipients are driven to give back as a way of honoring the legacy of their donors. Such is the case for Fair Lawn resident Mike Rizzo, who became a Certified Volunteer
by Chriseline Beaubrun
with NJ Sharing Network after receiving a lifesaving heart transplant from Newark Beth Israel Medical Center on November 17, 2016. “Prior to my heart transplant, I was missing out on life and its wonderful blessings,” Mike says. “Now I am able to spend time with my family and do the things I love to do, like visit Disney World and work on my landscaping. Honoring my ‘Donor Angel’ by spreading the life-saving message of organ and tissue donation has become a mission for me.” Mike, a former paramedic, has shared his story with other first responders, including groups at the Bergen County Police Academy and St. Joseph’s Regional Medical Center in Paterson. He wears his Donate Life recipient pin everywhere he goes, sparking conversations about donation on practically a daily basis. What’s the message he hopes to convey? “My heart transplant restored and returned my life to me—and to my family and friends,” he says. “I wouldn’t be alive if not for my ‘Donor Angel’ and the dedication of NJ Sharing Network.”
MIKE RIZZO WAS WAITING for a heart transplant when, at a party, he was introduced to Misty A. Marchioni, Manager of Administration and Regenerative Medicine Programs at NJ Sharing Network. Seven months later, he received the gift of life. “Knowing Mike has made me aware of the emotional side of transplantation; the highs, the lows, the struggles and triumphs,” explains Misty. “His ‘Donor Angel,’ as he calls her, didn’t just save a life, she saved the life of a genuinely selfless soul who could not be more grateful. Mike is living proof of why everyone should sign up to be a donor.”
NJ Sharing Network Certified Volunteer and heart transplant recipient Chriseline “Chris” Beaubrun had just completed her master’s degree in nursing when she was diagnosed with congestive heart failure. In her powerful book, New Heart, New Life (Christian Faith Publishing, Inc., 2017), Chris shares her experience from the perspective of both a patient waiting to a transplant recipient taking her first deep breath in more than a year. Chris hopes her story will inform and inspire organ transplant recipients and their families.
The Encore: A Memoir in Three Acts by Charity Tillemann-Dick In The Encore (Atria Books, 2017), acclaimed opera singer Charity TillemannDick recounts her remarkable journey from struggling to draw a single breath to singing at the most prestigious venues in the world after receiving not one but two double-lung transplants. Available on Amazon.com.
NJ Sharing Network Volunteers In Memoriam We fondly remember these bright stars who passionately advocated for donation.
Three-time heart transplant recipient Aliyah Boatwright was a passionate advocate for donation. Aliyah volunteered as a child and was pictured in our early High School Heroes program materials.
Nick Cerbo, a Certified Volunteer and dedicated member of our Morris Donate Life Regional Group, enjoyed more than 22 years of life after receiving his heart transplant.
6 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Two-time heart transplant recipient John Clyde was a dedicated Certified Volunteer. John was an active member of the Somerset Donate Life Regional Group and shared his story with high school students.
Stephanie Kuzminski, a longtime volunteer who served on our Donor Family Council and participated at the 5K Celebration of Life, was always smiling. Stephanie advocated for donation in honor of her nephew, Jonathon, who gave the gift of life.
Dan Midwinter was a student volunteer while he attended New Providence High School. Dan attended the 5K Celebration of Life every year as part of team Miles for Maddie, in honor of his little sister Maddie who gave the gift of life.
Longtime volunteer and transplant recipient Ed Birrer, along with his wife Debby and their son Max, participated in the 5K Celebration of Life since the very first year.
My Donation Connection
Neighborly Love Morris County resident Kim Roumes gives new meaning to the term “good neighbor.” When Kim read on Facebook that Bob Williams, a neighbor she hadn’t seen in years, needed a kidney transplant, she took the steps required to determine whether they were a match—and she was! Kim told News 12 that she saw it as a sign that it was meant to be. Instead of waiting anywhere from three to five years for a life-saving transplant, Bob, a traffic reporter on New Jersey 101.5, got his second chance at life in February. Bob thanked Kim on Twitter, “There are no words that can properly describe the love I have for this selfless and caring human being. We now share a lifelong bond. My gratefulness is eternal.”
Jorge Kalil Director of Information Systems NJ Sharing Network
TUNED IN New Jersey 101.5 Traffic Reporter Bob Williams began to support NJ Sharing Network at the 5K Celebration of Life after a close friend received a double-lung transplant. When Bob later himself needed a kidney tranplant, his neighbor Kim Roumes offered to be a living donor.
To learn more about Living Donation, visit www.NJSharingNetwork.org/Living-Donation.
I have worked in the organ donation and transplantation field for more than 20 years. During my tenure at NJ Sharing Network, our organization transitioned to a paperless organ allocation program, bringing into the 21st century our ability to match patients waiting with potential donors. As a systems professional, I don’t personally interact with donor families the way many of my colleagues do…that changed last March. I was at a graduation ceremony in upstate New York when my cell phone rang. NJ Sharing Network needed me to approach the father of a potential donor who only spoke Portuguese, my native language. The grief stricken father told me about how devastated he and his wife were over the death of their teenage son. He wanted desperately for something good to come out of this tragedy; he wanted his son to be a donor. I carefully answered his questions and received his consent. In the background, I could hear the mother crying. I didn’t realize at the time that a second phone call would be necessary. For more than an hour, I asked difficult questions a father could never imagine having to answer. After some time had passed,
“The core values of NJ Sharing Network call on us to do anything we can to help in our life-saving mission.”
Take a Virtual Tour Throughout our headquarters, we honor the legacy of organ and tissue donors, transplant recipients and community advocates in so many meaningful ways. We invite you to take a virtual tour of our state-of-the-art facility, where you will have the opportunity to experience everything up close, from the Wall of Remembrance, where the names of organ and tissue donors are displayed, to the tranquil Landscape of Life Meditation Garden. We hope you find this interactive virtual tour to be inspiring and informational. Join us in person at our monthly Advocacy Nights and experience firsthand the love and warmth of our headquarters. To take the virtual tour, visit www.NJSharingNetwork.org/Tour.
I visited the family to give my condolences in person. I was forced to face the brevity of life and witness the anguish a family goes through when they lose a loved one. The experience of approaching a family about tissue donation has stayed with me. I have a greater appreciation for my colleagues in the Donation Resource Center who must regularly have these difficult conversations with the loved ones of potential donors. No matter how uncomfortable it was, I would do it again—the core values of NJ Sharing Network call on us to do anything we can to help in our life-saving mission. NJSharingNetwork.org • CIRCLE OF LIFE 2019 7
INNOVATIONS
Human Innovation Transforms Transplantation NJ Sharing Network (NJSN) Transplant Laboratory Plays Critical Role in Completing the Circle of Life
NJSN laboratory opened Educators of future laboratory technologists and pathology residents
1994
Advances in technology—Magnetic beads implemented for the isolation of T & B Cells to improve sensitivity of donor/recipient compatibility testing
1999
1988 NJ Sharing Network’s fully accredited, stateof-the-art laboratory forms a life-saving bridge between potential organ donors and patients waiting. Our laboratory operates 24/7, performing histocompatibility testing for deceased and living organ donors and recipients, as well as conducting pre- and post-transplant evaluations. The facility has also been recognized for groundbreaking research facilitating the successful transplantation of difficult to match individuals. From the very beginning, the lab has been at the forefront for advocacy and efforts for living kidney donation. Since NJ Sharing Network was formed in 1988, the lab has been credited with saving the lives of more than 10,000 New Jersey residents. Thanks to Dr. Prakash Rao, PhD, MBA, FACHE, HCLD, VP/CLO, Diagnostics and Research Operations and Director, Transplant Laboratory, for sharing here the many milestones achieved over the years and providing a glimpse at how the lab is “transforming transplantology.”
NJSN’s Regenerative Medicine initiative • Used adult stem cells from researchconsented deceased donors • Procured and grew cells from deceased donor bone marrow iliac crest and adipose tissue • Proved that deceased donors could be considered as an additional source of stem cells, supplementing limited living donor stem cell resources
2014
NKR Teamwork Award for the 2nd longest living donor transplant chain (as of 2014)
2015
2016
Presented Organ Procurement Organization’s role in living donor transplants – ELPAT conference in Rome, Italy • First presentation of the role of OPOs in facilitating living donor transplant chains
2017
Procured and grew cells from deceased donor femur-derived bone marrow Cryopreservation of donor lymphocytes
8 2019 CIRCLE OF LIFE • NJSharingNetwork.org
State-of-the-art DNA technology implemented
Invitation to Erasmus Medical Center in Rotterdam, The Netherlands to learn from leaders in living donation • Psychosocial evaluation of altruistic donors to start kidney chains Decellularized a deceased donor heart and kidney • Potential for future reseeding with patient compatible cells. Start of longest single center paired kidney exchange in New Jersey (grows to 33 paired exchanges and counting)
2009 2007
1st ABO incompatible transplant Birth of Paired Exchange external kidney chains
Single Antigen Bead (SAB) assay available for the analysis of antibodies The importance of living donor transplants introduced to the NJSN senior leadership and transplant community • Persistence pays • Collaboration with Saint Barnabas Medical Center • Living donor advocacy Programs for paired kidney exchanges: National Kidney Registry (NKR), Alliance for Paired Donation (APD), and Kidney Paired Donation (KPD)
2013 NJSN’s IgG subtype assay developed • More specific crossmatch test • Facilitates safe transplants where they couldn’t be performed before NJSN’s Histogenomics assay developed • Helps predicts graft function • Reduces organ discard NJSN’s Molecular footprint of tolerance assay developed • I dentifies patients that will need lesser/or no immunosuppression
2018
Recipient
Observed living donor transplant program in Auckland, New Zealand • Process • A nalysis of long-term health of living donors
Recipient Individual on Transplant Waiting List
Donor
2011
2010
Recipient
Donor Altruistic Anonymous Donor
Next Generation Sequencing (NGS) • High resolution compatibility testing • Will resolve ambiguities for antibody profiling • Will help research efforts for specific alleles • R ejection, Tolerance, Pharmacogenomics Identification of proteins released during tissue processing • Heart • Adipose tissue
Recipient
Donor
Donor
Valentine’s Day kidney transplant chain • 8 transplants (16 lives transformed) • Largest single-center paired kidney exchange at that time
2019 Sterile processing system • Clinical/therapeutic use
Virtual crossmatches • Predicts the results of a live crossmatch test • To our knowledge, our algorithm is the only one that can also predict the strength of the crossmatch test • Decreases organ discard rates • Increases organ allocation
Transplants with little or no immunosuppression Decrease in organ discard Organ repair
Leader in transplant testing
Gene therapy
Patient advocates
Cryopreservation
Facilitates living donor transplant chains
Cell therapy Bio-printing of tissues and organs
Advances in regenerative medicine
Future NJSharingNetwork.org • CIRCLE OF LIFE 2019 9
COVER STORY
Every Breath They Take 10 2019 CIRCLE OF LIFE • NJSharingNetwork.org
68 New Jersey residents await a life-saving lung transplant, relying on oxygen to breathe and keeping strong physically and mentally for when the call comes. Here, two double-lung transplant recipients—and a patient waiting— describe what life is like before and after transplant surgery.
THERE’S NO BETTER WAY to start a conversation than over a slice of pizza! At Italian Village in Plainfield, double-lung transplant recipients Sarah Steinhauser and Darryl Price share their stories of hope with Dawn Burke, a patient at Newark Beth Israel Medical Center waiting for a life-saving lung transplant. Through our #SaveNJLives initiative, pizzerias and other restaurants are distributing pizza boxes and coffee sleeves with information about organ and tissue donation. Learn more on page 15.
COVER STORY
Dawn Burke
Waiting since September 2017
D
awn Burke believes in the power of prayer and positive thinking. The 59-year-old resident of Keyport starts and ends her day by praying. She also keeps affirmations posted around her home, including her favorite: No matter how you feel, get up, dress up, show up and never give up. Dawn is a patient at Newark Beth Israel Medical Center awaiting a life-saving doublelung transplant. For years, a chronic cough went undiagnosed until she was told in 2016 she suffered from idiopathic pulmonary fibrosis (IPF), a disease that causes permanent scarring in the lungs. She was placed on the transplant waiting list in September 2017. “I’m no longer able to work and everyday tasks leave me short of breath,” says Dawn. “Although I try to maintain my independence, it’s becoming increasingly difficult to do things on my own.” As a patient waiting, Dawn must remain within two hours of her transplant center should a suitable donor become available. She also attends pulmonary rehabilitation sessions at Monmouth Medical Center twice a week, as well as weekly yoga classes. It’s important for her to be physically fit for surgery, as she’s been told, the stronger you go in, the faster you will recover.
“Everyday tasks leave me short of breath.” Luckily for Dawn, her support system is wide. Family members and friends are ready to serve as caregivers after her transplant. They call and visit frequently and have helped her with rides, meals and whatever else she might need—and she looks forward to monthly card game nights with her pals. Once a month, she goes to a support meeting at Newark Beth Israel Medical Center where transplant recipients share their stories with patients waiting and help answer their questions. “Sometimes you feel like you are the only one going through something,” she says. “The group gives me hope and it comforts me to hear their stories. One woman who received a double-lung transplant at Newark Beth Israel has become a mentor and a friend.” A life-saving transplant would allow Dawn to return to the activities she loves, like gardening, photography and socializing, as well as achieve the dream of visiting her son who lives in Hawaii. “It’s something I’ve been thinking about lately,” she says, “Hopefully I’ll be getting there soon.” 12 2019 CIRCLE OF LIFE • NJSharingNetwork.org
STAYING POSITIVE and strong are important to Dawn, a double-lung transplant patient waiting. Earlier this year, she shared her story with the Asbury Park Press.
Sarah Steinhauser
A
s a college student, Sarah Steinhauser relied on oxygen to breathe, needed a feeding tube for nourishment, and, unable to walk long distances, was shuttled from class to class at Montclair State University. The lifelong Montville resident was born with bronchiectasis, a condition in which the walls of the bronchi thicken causing mucus to build up in the airways. From infancy, Sarah struggled to catch her breath. Her health took a turn for the worse in her early twenties, and she was placed on the waitlist for a double-lung transplant. In October 2018, a respiratory virus comprised her immune system and she was admitted into the Hospital of Pennsylvania Transplant Center in Philadelphia, where she was kept under close watch in the ICU. In less than a week, she received the incredible news—a deceased donor had been identified as a match—and she underwent life-saving surgery. Sarah will never forget the moment her breathing tube was removed and, for the first time, took a deep breath without assistance thanks to her donor’s gifts. “It was mind blowing. It almost felt like a dream,” she says. “Tougher than the physical recovery was accepting that I didn’t need that breathing tube. I was so used to having the oxygen, it was a safety blanket for me.” The 27-year-old is slowly returning to normal life. She monitors her health on a daily basis, taking her temperature and blood pressure and checking her heart rate. She is focused on eating healthy and remaining active. The little things are making the biggest difference, says Sarah’s mother, Valerie Wagner. “Recently, she was able to spend a night with family without having to go upstairs to rest or use her nebulizer. My heart goes out to her.” Sarah has not yet received clearance to work or travel, but she looks forward to a vacation, ideally somewhere tropical. On the horizon, she sees starting a career and moving into a place of her own. One thing she is ready for—to give back. Sarah first learned about NJ Sharing Network before her transplant surgery when she saw information about the organization’s #SaveNJLives initiative at Mara’s Café and Bakery in Denville. Sarah looked into NJ Sharing Network and decided to attend an Advocacy Night and became a Certified Volunteer. “I love sharing my story to help raise awareness for organ donation,” she says. Sarah is truly an inspiration. She proudly shares that despite the obstacles she faced in college, she never missed a day of school.
Six months post-transplant “I love sharing my story to help raise awareness for organ donation.”
LAST YEAR’S #SAVENJLIVES campaign led Sarah to connect with NJ Sharing Network.
NJ’s Only Lung Transplant Center The RWJBarnabas Health Advanced Lung Disease and Transplant Program at Newark Beth Israel Medical Center now gives state residents the ability to be listed closer to their homes. The reinstated program offers increased access to single and double-lung transplants, as well as comprehensive treatment and management of chronic and complex lung disease.
NJSharingNetwork.org • CIRCLE OF LIFE 2019 13
COVER STORY
Darryl Price
Three years post-transplant
D
arryl Price had barely been sick a day in his life when, at age 52, he was diagnosed with idiopathic pulmonary fibrosis. After doing some research on the internet, he asked his doctor flat out, “Am I going to die?” The Denville resident had a successful career as a software engineer. He had recently returned to college to finish his bachelor’s degree. In his spare time, he traveled and played competitive tennis. Now, he was being told he suffered from a fatal condition and would need a double-lung transplant to survive. During his time waiting, Darryl remained positive and kept busy. He took up photography and videography, and volunteered at a food pantry in Morristown. Staying active helped him get through this difficult period and he encourages transplant patients to not stop living while waiting. “Don’t disappear from the world,” he says. “Whatever you are interested in—learning a language, playing an instrument, traveling— don’t let the doubts and setbacks keep you from doing these things.”
“You try to see every day as a new opportunity.” The outlook for Darryl was grim in the months before his life-saving transplant surgery on June 24, 2016. Once he received his second chance at life, he immediately began setting new goals, telling his medical team that he wanted to be running by the time he finished rehabilitation and playing tennis within six months of returning home. It was also important for him to recover his independence, assuring his wife he would ask for help when he needed it. At 57, Darryl is living life to the fullest. He earns money through freelance coding projects and videography gigs. He participates in running events and shares his story as a volunteer for NJ Sharing Network. He’s also brushing up on his Japanese. Later this year, Darryl plans on spending three weeks touring Japan, where he once lived and worked but wishes he had spent more time exploring. His goal is to create a travelogue and perhaps spark an appetite for adventure in others. Darryl admits there have been bumps in the road. Health setbacks have left him feeling discouraged. “You deal with it,” he says, “and you try to see every day as a new opportunity.” 14 2019 CIRCLE OF LIFE • NJSharingNetwork.org
WAITING, IN HIS OWN WORDS “Everybody’s journey is different. In my case, the disease progressed pretty quickly and I had to have oxygen 24/7 whether at home or out shooting pictures,” says Darryl. “It wasn’t long before I had to start using my hover board whenever there was walking involved.”
He has given much thought to what it means to “honor the gift.” Personal achievement? Making the most of your second chance at life? Yes and yes. But his definition has evolved. “Honoring the gift also means being the best
version of yourself that you can; to inspire and encourage those who sorely need inspiration and encouragement. It means being known not so much for the gift you have received as for the love and kindness you show others.”
This Pizza Can Help Save a Life
Regions With Highest # of Patients Waiting
Raising awareness about patients waiting…one pie at a time April is National Donate Life Month and once again NJ Sharing Network is partnering with pizzerias, diners, and coffee and bagel shops to spread the word about organ and tissue donation and transplantation through our #SaveNJLives initiative.
IT TAKES A VILLAGE Joe Deserio, owner of Italian Village in Plainfield, is a proud #SaveNJLives partner.
3 COOL FACTS About the #SaveNJLives Initiative 1 P izzerias in the top 20 New Jersey towns
with the highest number of residents on the waiting list, such as Newark, Jersey City, Paterson, Plainfield and East Orange, will distribute 15,000 pizza boxes drawing attention to the number of people on the waiting list in that community.
2 Restaurants across the state as well as hospital partners will distribute 275,000 #SaveNJLives branded coffee cup sleeves.
3 M ovie theaters
in towns where the number of people waiting for a life-saving transplant are the highest will air a 30-second film on 70 screens during previews. The film highlights the moment a patient awaiting transplant receives the call about the gift of donation.
To learn how many people in your town are waiting—and how you can help save lives— visit www.SaveNJLives.com.
Why Minorities Are in Need Did you know the areas with the most people waiting are also the most diverse?
4,000
PEOPLE IN NEW JERSEY are currently waiting for a life-saving organ transplant
66% of those are minorities 55% of organ recipients in New Jersey are minorities
• M inorities are at greater risk for organ failure due to high rates of diabetes, hypertension and heart disease, making them more likely to need a transplant. • T he potential for a donor-recipient match is greater among members of the same ethnicity. • A greater diversity of donors increases the potential access to transplantation for everyone!
MAKING AN IMPACT Members of our Greater Newark/Essex Donate Life Regional Group continue to take action and educate their communities about organ and tissue donation. View all upcoming meeting dates and Donate Life Regional Group locations at www.NJSharingNetwork.org/Groups.
Stay tuned for our National Minority Donor Awareness events in August! Source: Organ Procurement and Transplantation Network, 2017.
Start the Conversation Talk to your family today about organ and tissue donation.
NJSharingNetwork.org • CIRCLE OF LIFE 2019 15
YEAR IN REVIEW
SAVING LIVES BY THE NUMBERS 163
VOLUNTEER
HOURS COMPLETED
Organ donation has increased % over the last six years (-).
IN
1,033 Hours
ORGAN DONORS =
537
TRANSPLANTS
marks the fourth year in a row of + organs transplanted.
participating in community events, health fairs and donor drives
91 Hours
speaking with hospital partners
43,000 Students
educated about donation
577 Volunteers
at the 5K Celebration of Life
KIDNEY
LIVER
LUNG
An additional transplants from living donors were facilitated by our laboratory.
161 Advocates TISSUE DONORS =
including Transplant Recipients, Donor Family Members, Living Donors and Patients Waiting
Thank you for making our life-saving mission possible. Your advocacy saves lives and gives hope to so many.
16 2019 CIRCLE OF LIFE • NJSharingNetwork.org
HEART
PANCREAS
More hearts were transplanted in New Jersey than ever before.
50,000
Eye donation has increased nine percent from the previous year.
HEALTH RESTORING GRAFTS
BONE DONORS
SKIN DONORS
EYE DONORS
HEART VALVE SAPHENOUS DONORS VEIN DONORS
NJ Sharing Network and our Foundation 2018 Combined Financial Position* Revenue
≈ $43 Million
28%
24% 62%
Transplant Laboratory
Organ Procurement
Grants 4% Contributions, and Other Income
10% AT IO
NS
Tissue Procurement
AL C LINIC
OP
ER
59% 5K Celebration of Life
General and Tribute Gifts
13% Special Events and Programs
Transplant Laboratory NJ Sharing Network’s fully accredited state-of-the-art transplant laboratory plays a vital role in our life-saving mission. • Histocompatibility testing to match potential organ donors and transplant recipients • Innovative research increasing the number of possible transplants • Facilitation of living donor transplantation
Expenses
≈ $41 Million
Public Education, Awareness and Outreach Transplant Laboratory
44%
7% 6%
S
General Administrative and Fundraising
17%
ER A TIO N
26%
OP
Organ Procurement
NIC
AL
CLI
Public Education, Awareness and Outreach
Tissue Procurement
NJ Sharing Network staff, along with a corps of over 500 volunteers, share the message of organ and tissue donation. • Events to honor and support families, such as the 5K Celebration of Life, the Donate Life Float at the Rose Parade and the Transplant Games of America • Education through youth programs, scholarship opportunities, high school and college presentations, nursing school workshops and an exhibit at Liberty Science Center • Resources for transplant recipients, patients waiting and caregivers preand post-transplant • Strategic partnerships through civic organizations, professional associations and conferences • Outreach through faith-based programs, community events, volunteer programs and Donate Life Regional Groups • Multimedia advertising and interview opportunities to share stories of donation and transplantation
Clinical Operations: Organ and Tissue Procurement NJ Sharing Network’s clinical team works 24/7/365 to steward the gift of life. • Evaluation of potential donors to determine suitability and safety • Surgical recovery and allocation of organs and tissue for transplant • Support for donor families through grief resources and compassionate care • Coordination of donor family and recipient correspondence • Education for hospitals and the medical community on the donation process • Training for NJ Sharing Network employees to improve relationships and authorization rates
*Financial Statements for NJ Sharing Network and the Foundation are unaudited for fiscal year ended December 31, 2018. Excess revenue is invested in the organization for continued sustainability. NJSharingNetwork.org • CIRCLE OF LIFE 2019 17
INITIATIVES
How You Help Us Save Lives!
NJ Sharing Network volunteers do an amazing job helping our organization spread the word about organ and tissue donation and transplantation. Whether you have a few minutes, an hour or a day, there are many meaningful ways to partner with us in our mission to save lives!
Visit Classrooms & Campuses NJ Sharing Network offers high school and college students, as well as educators, resources to save lives through organ and tissue donation. Our programs are designed to help schools and college institutions meet the core content curriculum standards mandated by the New Jersey Hero Act. NJ Sharing Network and our dedicated volunteers spoke to over 43,000 students in 2018. Interested in speaking at high schools and colleges? Resources for students and teachers can be found at www.NJSharingNetwork.org/Education. To set up a program or request a speaker or materials, contact education@njsharingnetwork.org.
Immaculate Heart NJ Sharing Network partnered with Dr. Selim Arcasoy, Medical Program Director of Lung Transplantation at New York-Presbyterian Hospital of Columbia and Cornell University, to give a school-wide presentation on organ donation and transplantation to students at Immaculate Heart. Dr. Arcasoy’s daughter, Leyla, is a junior at the Bergen County school.
Marlboro & Hillsborough Teens Through Donate Life Clubs, students have held fundraising and awareness events, as well as presented gifts to patients waiting.
High-School Training More than 30 volunteers participated in a recent high school speaker training. 18 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Engage Your Faith-Based Communities We invite you to start the conversation with your faith leaders and members of your congregation. There are many ways you can bring much-needed attention to this important cause. • Host a donor registration drive. • Request a speaker to attend faith services or special events. • Include information in your house of worship’s bulletin, newsletter and website. Interested in faith-based outreach? Contact Denise Peoples, Hospital and Community Services Coordinator, at dpeoples@njsharingnetwork.org or call 973-665-4687.
Share Your Story We invite you to share your personal connection to donation and transplantation, or your loved one’s story, with a photo or short video to tell us why this cause is so important to you. Stories submitted will be used throughout the year to help NJ Sharing Network raise awareness and give hope to the nearly 4,000 New Jersey residents who are waiting for a life-saving transplant. Please email your submissions to editor@njsharingnetwork.org. Or mail to: NJ Sharing Network Attn. External Affairs 691 Central Avenue, New Providence, NJ 07974 To learn more, visit www.NJSharingNetwork.org/Share.
At our Volunteer Education Day held in November, Emmy-Award winning broadcaster Steve Adubato, Ph.D. discussed how sharing your story is the most powerful way to advocate for donation and transplantation. Participants received tips and techniques for telling their individual experiences.
Learn more about our life-saving mission and become a Certified Volunteer by attending an upcoming Advocacy Night. See page 24 for details and upcoming dates! During National Donor Sabbath in 2018, NJ Sharing Network partnered with Montclair Film to present the feature length drama, A Question of Faith (2017), followed by a panel discussion. Volunteers also organized informational events and hosted registration drives at their houses of worship. NJSharingNetwork.org • CIRCLE OF LIFE 2019 19
RAISING FUNDS + AWARENESS
FEATURED CONTRIBUTOR
K
im Eason was flooded with emotions when she looked up to see the name of her beloved friend, Gregory Snell, etched on a leaf on the Landscape of Life Wall—a special place at our headquarters where we acknowledge contributions made to our Foundation in an individual’s honor or memory. The leaf honoring Greg, a kidney recipient from a living donor, resulted from an outpouring of support from two communities which cared deeply about him—the First Baptist Church of Vauxhall and the Maplewood Fire Department. Professionally, Greg made his mark as the first African-American firefighter on the MFD. On a personal level, Kim says, he is remembered as a jovial, kind man who even during his darkest days, when he was on dialysis and not feeling well, never complained and always had a smile on his face. Greg passed away in 2017, six years after receiving his kidney transplant from a living donor, Fire Chief Joseph Callaghan. “We hoped to raise $2,000, half from our church and the other half from the fire department,” says Kim. “We nearly tripled our
goal as the community stepped up to honor Greg’s life and the gift of his living donor.” In addition to providing financial support, the effort helped heighten awareness about the importance of registering as an organ and tissue donor, especially among African-American communities which have higher rates of kidney disease and greater numbers of patients waiting for a life-saving transplant. “Our church invited a speaker from NJ Sharing Network to talk about donation so members of our congregation could fully understand what happens when someone donates their organ and gives life. It was a powerful way of starting the conversation among our congregants.” The church and fire department will relaunch their fundraising efforts in the months leading up to the 5K Celebration of Life, where family and friends will once again participate on Team 228 (Greg’s badge number). “Greg lived the six additional years of life he was given to the fullest,” Kim says, “and we will proudly continue to celebrate his life by supporting the Foundation at NJ Sharing Network.”
Family Fund Making an Impact
WITH LOVE From left, kidney transplant recipient Gregory Snell, who passed away in 2017, with his beloved friend Kim Eason and living kidney donor Joseph Callaghan.
Going the Extra Mile
Established in 2014, the Joseph D’Addio Fund celebrates the life of Joseph D’Addio, a loving father, husband and friend to many who saved and enhanced the lives of over 80 people through organ and tissue donation. This year marks the 10th anniversary of Joseph’s passing. A special thanks to this family fund, dedicated to increasing outreach to multicultural communities, for making these programs possible:
Now in Spanish! A new website is helping spread our life-saving message to Spanishspeaking audiences. In order to reach audiences effectively and achieve the greatest impact, NJ Sharing Network worked with a consultant specializing in marketing to Latin American communities. The site features not only information about organ and tissue donation, but also personal stories about families who have been touched by donation.
, ad latina comunid la ra a p b l. no o we .org/Espa estro siti Visite nu gNetwork n ri a h JS w w w.N
The Power of “Yes” When members of our clinical staff approach families about donation, it is critical they do so with both professionalism and compassion. “The Carousel of Hope & Healing,” a threeday Neuro-Linguistic Training for clinical staff, inspires organ and tissue donation through empowering hope, increases the rate of authorization and improves relationships with hospital partners. Among the topics discussed were understanding family concerns and fears and the essential nature of positive language.
20 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Foundation Board Member Ezequiel Garcia raised funds for our life-saving mission and honored the legacy of his son, organ and tissue donor Reinaldo Garcia, by running the 2018 New York City Marathon. As a result of Ezequiel’s efforts, and with the generosity of family and friends, a butterfly was recently added to our Landscape of Life Wall acknowledging contributions made in Reinaldo’s memory. And Ezequiel didn’t stop there! This April, he participated in the Boston Marathon.
HONORING FAMILIES
At NJ Sharing Network, we believe we can never do enough… As we continue to honor the legacy of organ and tissue donors, our support services have been extended to the transplant community
Special Bonds
Caring for Our Community
Families of donors and recipients who wish to meet one another often choose to do so at NJ Sharing Network’s headquarters. 1) In coordination with our Family Services team, the family of organ donor Steven Krevolt met with Steven’s heart recipient, Joseph Doll. 2) The Krevolt family took turns listening to Steven’s heart beat inside Joseph’s chest. 3) It was an emotional day for both families. 4) NJ Sharing Network also facilitated a meeting between the family of donor Erik Agosto and one of his organ recipients, Miriam, who had been in a coma for a month prior to receiving her life-saving liver transplant. Miriam (fifth from the right) along with her family and donor’s family shared special time together in the Landscape of Life Meditation Garden. 1
2
3
NJ Sharing Network has offered support to donor families for the last 30 years. We have extended that support to other critical groups touched by donation and transplantation. In partnership with our transplant centers, we launched a number of initiatives designed to support patients waiting, transplant recipients, caregivers and living donors…and we are already seeing an impact! Patients Waiting: During evaluation, patients are EMPOWERING Transplant professionals provided an overview of NJ like Maria Montero, above, Waitlist Clinical Sharing Network, shown Nurse Coordinator at University Hospital, are providing our resources to patients a video tour and given a and their families. brochure, “Support for You & Your Family on Your Transplant Irene Hartrum recently Journey.” Informational materials celebrated 10 years since her are also available in waiting rooms life-saving transplant from a living kidney donor, her and clinics. Riley’s Dance, one of husband, Tracy. our Foundation’s Family Funds, has partnered with Uber Health and transplant centers to provide transportation to patients in financial need who lack resources to get to urgent medical appointments pre- or post-transplant. Living Donors: Candidates now receive information on how to get involved with NJ Sharing Network as well as a letter and gift on their day of donation. We’ve formed a Living Donor Council, introduced educational sessions on living donation and hosted a Living Donor Reception.
4
Transplant Recipients: After transplant, recipients are given materials offering support to them and their caregivers, as well as a guide to writing to their donor family. They are also presented with a gift, a Donate Life pin. Caregivers: Our family fund, JellyBean’s Rainbow, has created care packages for recipients and caregivers, and a Caregivers Council has been formed to develop programs for caregivers. Transplant Centers: We welcome our hospital partners to tour our facility and encourage them to attend Advocacy Nights to learn about the many resources available for their patients. To learn more, contact Jan Hines, Assistant Director, Transplant Community Relations, at 551-574-3090 or jhines@njsharingnetwork.org.
NJSharingNetwork.org • CIRCLE OF LIFE 2019 21
SAVE THE DATE
2019 JOIN US
…in our mission to save lives.
April
MAY
IS NATIONAL DONATE LIFE MONTH
During Donate Life Month, we invite you to spread the life-saving message of donation. Encourage people to register as organ and tissue donors. Share your story on social media. Become a Certified Volunteer. There are many ways to get involved and help save lives! To download printed materials, cover images and profile images for social media, and more, visit www.NJSharingNetwork.org/DLM.
WEAR BLUE AND GREEN ALL MONTH LONG Wearing and displaying the colors of donation are powerful and simple ways to show your support! Get creative and send your best Blue and Green Day photos to socialmedia@njsharingnetwork.org and we will share them! When posting on social media, be sure to use #NJSN and #DonateLifeMonth.
3
rd
WRAPPED IN LOVE SHAWL PACKAGING NJ Sharing Network Headquarters New Providence, NJ | 11:00am–1:00pm Through the Wrapped in Love program, NJ Sharing Network has provided thousands of handmade shawls, lap blankets and scarves to the families of organ and tissue donors. Each item is lovingly created by a volunteer wishing to honor and bring comfort to the loved ones of those who generously gave the gift of life. We hold regular Knit Nights for knitters and crocheters as well as shawl packaging events. Upcoming Knit Night: May 15, 4:30-6:30pm
To learn more, contact Lisa Colasurdo at lcolasurdo@njsharingnetwork.org or 908-516-5687.
4
th
2020 DONATE LIFE TRANSPLANT GAMES INFORMATION SESSION NJ Sharing Network Headquarters New Providence, NJ | 9:00am–12:00pm Calling all transplant recipients, living donors, donor families, transplant professionals, caregivers, supporters and volunteers! We invite you to meet members of Team Liberty and hear exciting news about the Transplant Games of America coming to the Meadowlands!
To sign up, go to www.NJSharingNetwork.org/TGA-Session. 22 2019 CIRCLE OF LIFE • NJSharingNetwork.org
Sign up today! www.NJSharingNetwork.org/5K
JUNE th 24
TEAM LIBERTY 6TH ANNUAL GOLF OUTING
NJ National Golf Club | Basking Ridge, NJ Join Team Liberty for the “18 for 8” golf outing and help support organ and tissue donation.
For information on Team Liberty’s “18 for 8” golf outing, contact Mike Strusiak at 201-870-2496 or mike@schripps.com.
AUGUST st 1– th 7
NATIONAL MINORITY DONOR AWARENESS
National Minority Donor Awareness is a nationwide observance that honors the generosity of multicultural donors and their families. This program underscores the critical need for people from diverse communities to register as organ and tissue donors. It is also a time to promote healthful living and disease prevention to decrease the need for transplantation. Events will be taking place throughout August. Stay tuned!
To learn more, visit www.NJSharingNetwork.org/NMDA.
NJSharingNetwork.org • CIRCLE OF LIFE 2019 23
SAVE THE DATE
OCTOBER th 14
21ST ANNUAL GOLF CLASSIC + TENNIS TOURNAMENT Ridgewood Country Club | Paramus, NJ Join us for an unforgettable day at one of New Jersey’s premier private golf courses. The day includes brunch, a cocktail and awards reception, a silent auction and tricky tray. Prizes will be awarded in different golf categories and tennis contests.
To learn more and sign up, visit www.NJSharingNetwork.org/Golf.
NOVEMBER th– 15 th 17
NATIONAL DONOR SABBATH
This initiative seeks to educate faith communities about the critical need for organ and tissue donation and the vital role faith plays in making the decision to register as a donor. Partner with your faith leaders to share the life-saving and healing power of organ and tissue donation.
To learn more, contact Denise Peoples, Hospital and Community Services Coordinator, at dpeoples@njsharingnetwork.org or call 973-665-4687.
ADVOCACY NIGHTS NJ Sharing Network Headquarters | New Providence, NJ Tuesday, May 7 Tuesday, August 13 Monday, June 10 Thursday, September 19 Wednesday, July 24 Overview & Tour: 5:00–7:00pm Volunteer Certification Training (optional): 7:00–8:30pm In order to become a Certified Volunteer, you must participate in the entire evening. Meet fellow members of the donation and transplantation community, receive a tour of our state-of-the-art facility, and learn how to participate in our various community education programs.
24
th
INTERFAITH GATHERING
To learn more and sign up, visit www.NJSharingNetwork.org/Advocacy-Night.
NJ Sharing Network Headquarters New Providence, NJ | 5:30–8:00pm In preparation for National Donor Sabbath, observed nationally in November, we invite you to join fellow faith leaders at this special event. The evening’s program will include an interactive discussion focused around religious traditions, personal testimonies from organ transplant recipients, and families of organ and tissue donors explaining how their faith played a role in their experience. Tours of our state-of-the-art facility will be available and dinner will be served.
To learn more and sign up, visit www.NJSharingNetwork.org/Faith-Leader-Program. 24 2019 CIRCLE OF LIFE • NJSharingNetwork.org
COPING WITH GRIEF All donor family members are welcome to attend a series of workshops on grief facilitated by members of our Family Services team. These free programs are hosted at our headquarters in New Providence. May 5: What About the Kids? Helping Children, Teens, and Young Adults Through Loss September 29: When the Unthinkable Happens: Dealing with Trauma in Loss November 17: Hope for the Holidays: Healing, Honoring, and Finding Peace in Loss To learn more and sign up, contact familyservices@njsharingnetwork.org or visit www.NJSharingNetwork.org/Family-Services-Programs.
NJ is welcoming its most inspiring event ever...the Transplant Games of America! More than 12,000 people are expected to attend this biennial multi-sport festival recognizing the success of donation and transplantation and honoring the generosity of donors. On July 17–22, 2020, New Jersey will be home to competition, triumph, honor and legacies, hope, awareness, love, laughter and life. And we’re doing it the only way we know how. Bigger, louder and bolder… because that’s just how we roll in Jersey.
Join Team Liberty Calling all… Transplant Recipients • Living Donors Donor Families • Supporters Transplant Professionals Sign up at www.GoTeamLiberty.org.
Jersey, Let’s Do This! You are essential to our success. More than 4,000 volunteers will be needed! Start the conversation about volunteering at the Games in your community and workplaces! More details coming soon.
INFORMATION SESSION
THANK YOU TO OUR GENEROUS SUPPORTERS*
Saturday, May 4, 2019 9:00am–12:00pm
Champion American Dream
Register at www.NJSharingNetwork.org/ TGA-Session
Leader Hackensack Meridian Health RWJBarnabas Health Diamond LiveOnNY Platinum University Hospital Gold Gift of Life Donor Program MTF Biologics Nevada Donor Network Silver Mid-America Transplant Copper Eversight Supporter Wiss & Company
At the first meeting of the Local Organizing Committee, the energy in the room was palpable. The committee is excited for this tremendous opportunity and will meet monthly to ensure the success of the Games.
*As of 3/14/19
For sponsorship opportunities, contact Amanda Tibok at 908-516-5649 or atibok@njsharingnetwork.org.
www.NJSharingNetwork.org/TGAMeadowlands2020
NONPROFIT ORG U.S. Postage
691 Central Avenue New Providence, NJ 07974 800-742-7365 • 908-516-5400 www.NJSharingNetwork.org
PAID Union, NJ
Permit No. 931
Who We Are
Connect with us on
NJ Sharing Network is a non-profit, federally designated organ procurement organization (OPO) responsible for the recovery of organs and tissue for the nearly 4,000 New Jersey residents currently awaiting transplantation, and is part of the national recovery system, which is in place for the 115,000 people on waiting lists.
@NJSharingNetwork @NJSharing
NJ Sharing Network is a designated OPO by UNOS; accredited by AOPO, ASHI, AATB and CAP; and registered with the FDA and NJ and NY State DOH.
@NJSharingNetwork
NJ Sharing Network is a member of Community Health Charities.
@NJSharing
If you receive multiple magazines and would only like one or if you no longer wish to receive information from NJ Sharing Network, please call 908-516-5400.
2019 Winner of
For the second consecutive year, NJ Sharing Network has been named by NJBIZ—a publication dedicated to covering business news—as one of the Best Places to Work in New Jersey. The distinction results from data collected by a confidential survey of employees and recognizes our organization’s dedication to our team’s professional growth and quality of life.
NJ Sharing Network
One of New Jersey’s “Best Places to Work!” “I help donor families honor their loved one’s legacy as a hero.”
2019
PROUD HOST OF
“I am so proud to be a part of our mission and to know that the work we do is saving lives and helping families heal.”
“I can’t imagine working anywhere else.”
