CIRCLE LIFE of
Spring/Summer 2020 | Volume 11 Issue 1
Transplant Games of America
Join us in Honoring the Journey
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.
Quiénes Somos NJ Sharing Network se dedica a salvar y mejorar vidas a través de la donación y el trasplante de órganos y tejidos. Para obtener más información, participar y registrarse como donante de órganos y tejidos, visite:
Now 3 Consecutive Years!
NJSharingNetwork.org/Español.
2020
JOIN OUR TEAM of exceptional professionals who live our core values. Dedicated | Eager | Compassionate | Resourceful | Team-Focused NJ Sharing Network is an equal opportunity employer. EOE/M/F/D/V For a list of open positions, visit NJSharingNetwork.org/Careers. To learn more, get involved and register as an organ and tissue donor, visit:
NJSharingNetwork.org
CIRCLEof LIFE JOE’S CORNER Thanks to your passion and commitment, we are making a difference. In 2019, over 1,400 organ and tissue donors generously gave the gift of life, and, for the first time, the number of organ donors in a single year surpassed 200. Also of note, over the last decade the number of organs transplanted increased by 38%, and we expect this positive momentum to continue (page 4). It’s hard to believe more than two years have passed since we announced winning the bid to host the 2020 Donate Life Transplant Games. In just a few months, (July 17-22), we will bring our life-saving message to our biggest stage ever. Whether you sign up to compete, lend a hand as a volunteer, support the Games as a sponsor, or cheer on our competitors from the sidelines—we invite you to be part of something truly special. Check out “Honoring the Journey” (pages 14-17) for details and meet the three Team Liberty participants pictured on the cover, Lakisha, Greta and Basil. This Spring, we will mark the 10th anniversary of the 5K Celebration of Life, where each year more than 10,000 members of our donation community come together to honor, to remember and to give hope (pages 18-19). We calculate runners and walkers have logged more than 150,000 miles—the equivalent of six times around the earth! What a testament to your dedication to help save lives. Spreading the message about organ and tissue donation and transplantation is a group effort. We are thankful for all who share their stories in the media (pages 6-7), participate in public education and outreach efforts (pages 8-10), and help raise funds and awareness (pages 20-21). This issue’s Featured Contributor is a remarkable young man who contributes the money he makes tutoring to our Foundation. There is so much to look forward to in 2020, from the Games to the 10th anniversary of the 5K Celebration of Life to the many other events planned throughout the year (pages 23-24). The new decade brings new opportunities to fulfill our life-saving mission.
2020 | Volume 11 Issue 1
Addressing the Impact of COVID-19 As this magazine goes to print, the increased risk associated with the COVID-19 virus has greatly impacted our day-to-day lives, and we have suspended all events and programs through the end of April. We are closely monitoring state and federal agencies, along with guidance from our own medical experts, to ensure that our future schedule of events can be safely conducted, including our 5K Celebration of Life. The health and wellbeing of our donation and transplant family is always our highest priority, and decisions that could impact that will be made with careful and thoughtful consideration. Updates will be provided on our website and social media pages.
Joseph S. Roth President and Chief Executive Officer
BOARD OF TRUSTEES Michael P. Hedden, Chair Anthony L. Marchetta, Vice Chair Ciro A. Scalera, Treasurer Bonnie Evans, Secretary John Creel Edward J. Florio, Esq. Howard A. Nelson, Immediate Past Chair Laura Patt James Ratican Peter Rooney Stephanie Schwartz Nancy E. Shafer-Winter, RN Antoinette Spevetz, MD Charles G. Walker Ex-Officio Members Joseph S. Roth, President and CEO John S. Radomski, MD, Chief Medical Director
ADVISORY BOARD John S. Radomski, MD, Chair Margarita Camacho, MD Janice Campbell Donna Ciufo, RN Kristin Fless, MD Stuart Geffner, MD Michael Goldstein, MD James Guarrera, MD Lou Jablonski Kelly Lemon Scott A. Meyer, MD Ronald Pelletier, MD Prakash Rao, PhD Francis Weng, MD Dorian J. Wilson, MD Joe Yaccarino Ex-Officio Members Joseph S. Roth, President and CEO Carolyn Welsh, VP and Chief Clinical Officer
FOUNDATION BOARD Philip S. Kolm, Chair Randi Geffner, Vice Chair Dan Sarnowski, Treasurer Honorable F. Michael Giles, Secretary Steve Alessi Arif Asif, MD Chris Bautista Jane Buckiewicz Patrick Buddle, MD Victor D. DiSanto Sandy Erwin Ezequiel Garcia Laura Coti Garrett Paul Jova Debra L. Morgan 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 EXTERNAL AFFAIRS Mara Barlow Jan Hines Veronica Horvath Nandhini Sasikumar Amanda Tibok HOSPITAL AND COMMUNITY SERVICES Alyssa D’Addio HUMAN RESOURCES Roxana Beltran LABORATORY Ijeoma Okere Editorial and Design Teresa Akersten Emily Fitterman Send comments to editor@njsharingnetwork.org.
INSIDE NJ SHARING NETWORK
SPECIAL RECOGNITIONS Welsh Named to Eversight Board Carolyn Welsh, Vice President and Chief Clinical Officer, has joined the Board of Directors for Eversight, the national nonprofit eye bank network. Carolyn, who began a three-year term in January, will work alongside fellow board members to see that Eversight’s business and corporate affairs align with the organization’s mission and strategic goals. According to David Bosch, Eversight President and Chief Executive Officer, “Carolyn brings powerful business experience and insights from her longtime work in life-giving donation as well as organizational leadership.” Working closely with NJ Sharing Network, Eversight is responsible for recovering, evaluating and providing human eye tissue for transplantation and promoting donation awareness through public and professional education. In 2019, 393 people in New Jersey in need of sight-restoring corneal transplants received them through Eversight.
Tibok Elected Vice-Chair of AOPO Council Amanda Tibok, Assistant Director, Philanthropy and Foundation Programs, is serving as 2019-2020 Vice-Chair of the Fund Development Council for AOPO (Association of Organ Procurement Organizations). “This is a great opportunity to share the strategies our Foundation has found most effective,” Amanda said. “By sharing our best practices, we can raise more funds and awareness for our collective mission to increase the number of lives saved and enhanced through organ and tissue donation and transplantation.”
Living Our Core Values: Dedicated, Eager, Compassionate, Resourceful and Team-Focused NJ Biz has named NJ Sharing Network one of the Best Places to Work in the state for three consecutive years! We are proud of this designation and give large credit to our dedicated staff of more than 150 professionals. Here’s what some of our team members have to say about working at NJ Sharing Network: “I have been a nurse for 18 years and am honored the last 12 have been in organ and tissue donation. Transitioning families and their loved ones from living to giving is my calling in life and I wake up every day with the spirit of hope.” JUSTIN JOHNSON, Director of Clinical Services
“I am humbled to be part of the team that contributes to achieving the ultimate miracle...The Gift of Life.” TINA BEZERRA, Hospital Services Manager
“I provide services to donor families, bringing them comfort in knowing that their loved one’s generous gift saved the lives of others. I’m very proud to be part of such a compassionate team.” NORMA SANTIAGO, Administrative Assistant, Clinical Department
“For the past 18 years, I have been very proud to be a part of an amazing team that works to save and enhance lives through organ and tissue donation.” RUBEN LAMBERT, Surgical Recovery Specialist
All in a Day’s Work: Our Peer Recognition Program Each month, our staff members have the opportunity to recognize their peers for going above and beyond in demonstrating our core values. Employees place nominations in a ballot box in our cafeteria and two nominations are picked at random and shared during our all-staff meeting. The Peer Recognition Program began in early 2013 and has acknowledged hundreds of our employees. Examples of their efforts include rapidly creating and delivering a funeral home certificate to a donor’s funeral service, and showing compassion by providing aftercare for a loved one after their passing.
2 2020 CIRCLE OF LIFE • NJSharingNetwork.org
VOLUNTEER SPOTLIGHT
Donor Father Teaches Powerful Lesson About Donation Tom Gano of Cherry Hill has dedicated his retirement years to educating New Jersey high school students about donation. In the 18 years Tom has been coordinating presentations, more than a quartermillion students have been reached. In 2019, he visited 46 schools (nearly 8,500 students) through NJ Sharing Network’s high school education program. While these are all big numbers, Tom is motivated by one person—his
CLASSROOM COHORTS Donor Father Tom Gano (right) and transplant recipient Rich Hayes team up to educate New Jersey students.
INTERESTED IN SAVING LIVES? Join NJ Sharing Network's team of dedicated and passionate professionals and embark on the most rewarding career of your life.
"I love what I do and working with a great team makes saving and enhancing lives that much more meaningful." DENNIS, Senior Specialist, Laboratory NJ Sharing Network offers exceptional benefits to EXCEPTIONAL people, including: Medical
Savings and Investment 401(k)
Dental
Educational Assistance
Prescription
Generous Paid Time Off Program
Vision Care Group Life and AD&D Insurance Short- and Long-Term Disability Long-Term Care
Car Allowance for Applicable Positions Section 125 Flexible Spending Account Employee Assistance Program
NJ Sharing Network is an equal opportunity employer. EOE/M/F/D/V
son, Curtis, who saved four lives and helped heal many others as an organ and tissue donor. Curtis was 16 when he was struck by a car while riding his bicycle. He was a kind and giving young man; and Tom and his wife, Vivian, believed he would have wanted to help others as a donor. “At first, students aren’t paying attention and then I start telling my story and pass around a picture of Curtis. Suddenly all eyes are on me,” Tom said. “Over the years I have found that if you talk to one kid you are actually talking to three people,” he said. “It’s important the students go home and discuss being an organ donor with their families, sharing what they want and asking about their wishes.” For each presentation, Tom pairs a donor family member with a transplant recipient. On many occasions, he teams up with Rich Hayes, a liver recipient from Monroe Township. Rich visited nearly 40 schools last year. It’s a way for him to give back and honor his donor. “Tom’s commitment of time is just unbelievable. He inspires me,” Rich said. “He has built strong relationships with the teachers and they appreciate the positive impact these presentations have on their students.” Teachers have shared how students are buzzing about donation when they leave the classroom and how former students have proudly showed them the donor designation on their drivers’ licenses. “When you get this type of feedback, you know you are making a difference,” Rich said. High school educators are NJ Sharing Network Certified Volunteers who have completed specialized training. To learn more, contact education@njsharingnetwork.org.
Shaping the Future Transplant laboratory testing is an integral part of saving and enhancing lives through organ and tissue transplantation. NJ Sharing Network’s LABORATORY SCIENCE students from Monmouth state-of-the-art Medical Center training with Dr. Prakash Rao, PhD, laboratory provides MBA, FACHE, HCLD, VP/CLO, Diagnostics and Research a remarkable Operations and Director, Transplant Laboratory. training resource for New Jersey Medical Laboratory Science (MLS) programs, Saint Barnabas Medical Center and Rutgers New Jersey Medical School pathology residents. Our training program is designed to showcase specialized skills and tools available to MLS students and pathology residents as they prepare for successful careers as clinical laboratory professionals. MLS students experience a day of didactic instruction and experimental bench-level learning delivered in the laboratory. Pathology residents receive one-on-one instruction by shadowing a member of our team for a week. During that time, the residents gain a better understanding of the important role medical laboratory professionals play in providing timely, accurate and safe patient care to the transplant centers we serve. Our laboratory has received positive feedback and we have seen an increase in requests from several training programs. The MLS programs have also become a valuable resource for the laboratory to hire highly trained professionals. NJSharingNetwork.org • CIRCLE OF LIFE 2020 3
2019 SNAPSHOT YOUR ADVOCACY SAVES LIVES 1,400 GENEROUS DONORS GAVE THE GIFT OF LIFE
OVER
206
601
38%
ORGANS TRANSPLANTED
INCREASE IN ORGANS TRANSPLANTED OVER THE LAST DECADE
173
Kidney
Heart
Lung
TISSUE & EYE DONORS HEALED AND ENHANCED QUALITY OF LIFE
50,000
Liver
326
1,139
Skin Donors
773
137
Eye Donors
316
64
Bone Donors
481
ORGAN DONORS GAVE THE GIFT OF LIFE
INDIVIDUALS MADE THE DECISION TO BECOME LIVING DONORS
Pancreas
37
18
HEALTH RESTORING GIFTS MADE POSSIBLE
Saphenous Vein Donors
43
Heart Valve Donors
82
THE NEW JERSEY DONOR REGISTRY HAS GROWN TO 2.6 MILLION To register as an organ and tissue donor, go to NJSharingNetwork.org.
4 2020 CIRCLE OF LIFE • NJSharingNetwork.org
AND GIVES HOPE TO SO MANY 3,000 HOLIDAY ORNAMENTS given to families of organ and tissue donors
100 BOOKS
purchased to support grieving family members (+ access to online Grief Words library)
110,000 DONATE LIFE BRACELETS distributed
990 SHAWLS
created for families of organ and tissue donors through Wrapped in Love “Needlework design and creativity have spanned the centuries. To me they are part of the ‘circle of life.’ My friends Marlene and Molly and myself see our donations to Wrapped in Love as a meaningful gesture connecting the lives of organ donors and their recipients. We have been contributing for over three years now and were ‘recruited’ by Betty Baker, CentraState liaison for NJ Sharing Network.”
700 INFO/SUPPORT PACKETS provided to newly transplanted recipients, caregivers and living donors
— Marge Zimnes, Wrapped in Love
10,000 PARTICIPANTS
(including 377 teams and 380 volunteers) gathered at the 5K Celebration of Life
50,000+ STUDENTS
educated about organ and tissue donation at high schools, colleges and nursing schools
400+ COMMUNITY EVENTS
where volunteers advocated for donation
75% of OUR PARTNER HOSPITALS supported a national awareness campaign
148 NEW CERTIFIED VOLUNTEERS completed training
300 NEW MEMBERS
joined Team Liberty for the Transplant Games of America
Thank you for making our life-saving mission possible. NJSharingNetwork.org • CIRCLE OF LIFE 2020 5
IN THE COMMUNITY
NETWORK NEWS From hyperlocal news sites to tri-state area news stations, NJ Sharing Network partners with media outlets to shed light on the importance of organ donation and transplantation.
Here’s a look at some of the biggest headlines from 2019. PEOPLE.COM
“Married Couple Teams Up to Donate Kidneys to Strangers” Cheryl Cohen and her husband, Frank Kimchick, love to do things together—even save lives! Cheryl and Frank both decided to be altruistic living donors and, in 2019, they each donated a kidney to a complete stranger. Cheryl, a former Foundation board member, told People.com she was inspired by her brother, whose life was extended for eight years after receiving a heart transplant. On National Philanthropy Day, the couple’s story appeared on People.com.
EYEWITNESS NEWS
“Up Close with Bill Ritter” Bill Ritter, co-anchor of WABC-TV New York’s Eyewitness News, interviewed heart transplant recipient Jill Szalony and Joseph Roth, President and CEO, NJ Sharing Network. The informative and inspirational segment ran a FULL EIGHT MINUTES!
NEW JERSEY 101.5
“Bob Williams is recovering thanks to NJ neighbor and kidney donor” When Kim Roumes learned on Facebook that radio traffic reporter Bob Williams needed a kidney transplant, she thought, that’s what neighbors are for! The feel-good story was picked up by several media outlets, INCLUDING HIS OWN STATION, New Jersey 101.5. 6 2020 CIRCLE OF LIFE • NJSharingNetwork.org
NJ.COM
“This NJ girl is outgrowing her kidneys and the transplant clock is ticking” Single father James Sorenson wants nothing more than for his daughter, Jayla, to receive the kidney she needs to restore her health. He’s shared his story with several media outlets including this WELLREAD piece on NJ.com. In 2019, Sorenson, a distance running coach and captain of the 5K Celebration of Life Team Jayla’s Journey, recruited members of his track team. They finished in the top six positions of the Long Branch race.
How’s Our Social Status?
ASBURY PARK PRESS
“‘This is his reason on earth’: Middletown toddler’s death gave the gift of life”
Quite good! With more than 22K followers, Facebook is one of the most important tools we have for spreading news and information about donation. Thanks for engaging with us and sharing our posts—sharing is truly caring! Here are your favorites from 2019:
The Asbury Park Press—with 1.5 MILLION VISITORS per month— wrote about the special bond between kidney recipient Dorothea Duffy and Susan Callari Diamond, the mother of her donor, Ben Diamond. Dorothea and Susan walked together as part of Team Ben 10 at the 5K Celebration of Life in Long Branch. NORTHJERSEY.COM
“Rose Parade float to honor New Jersey organ, tissue donors” The unveiling of organ donor Johnny Cuffe’s Rose Parade floragraph was covered by NorthJersey.com, which is part of the Gannett news network that reaches 46 MILLION VISITORS per month.
Top Photo #DonateLife Reach: 92,204 | Engagement: 11,540
ROI.COM
Top Video Rose Parade Float Views: 13,116 | Reach: 46,125
“NJ Sharing Network receives $15K for taking home Sax LLP’s Annual Founders Award” NJ Sharing Network was honored to receive the 2020 Founders Award presented by Sax LLP, a Clifton-based accounting, tax and advisory firm. Todd Polyniak, center, Head of Sax’s Notfor-Profit Practice, presented the $15,000 top prize to Foundation Chair Phil Kolm, left, and President and CEO Joe Roth. NJ Sharing Network was selected for best demonstrating the impact it has on its beneficiaries. The EXCITING NEWS was featured on ROI.com and other local news outlets.
Most Popular Shared Link NJ1015.com Reach: 43,705 | Engagement: 4,218
Follow us!
NJSharingNetwork.org • CIRCLE OF LIFE 2020 7
IN THE COMMUNITY
Here, There and Everywhere
With the help of our partners, we take our life-saving message on the road.
1
2
1 & 2 NJ Sharing Network kicked off National Donor Sabbath with a Faith Leader Program. The discussion, led by Denise Peoples, Hospital and Community Services Coordinator, touched on religious traditions and common myths and misconceptions about donation. Clergy, including a rabbi who saved two lives as a living donor, contributed their perspectives, and family members of donors along with transplant recipients shared the role faith played in their experiences. 3 NJ Sharing Network’s Funeral Home and Medical Examiner Liaisons, from left, Ashlee Davis and Wendy Rothschild, represented our life-saving mission at the New Jersey Funeral Director Convention in Atlantic City.
3
4 At NJ Monthly’s Top Docs event, Amanda Tibok, right, Assistant Director, Philanthropy and Foundation Programs, shared information about the 2020 Donate Life Transplant Games. Amanda is pictured with Diana Stroup, the magazine’s Senior Account Executive. 5 Foundation Board Chair Phil Kolm and Ametra Burton, Philanthropy and Foundation Programs Coordinator, advocated for donation at the NJ League of Municipalities Conference in Atlantic City. 8 2020 CIRCLE OF LIFE • NJSharingNetwork.org
5
4
6
8
7
9
6 In October, Breast Reconstruction Awareness (BRA) Day raised awareness about the role of donated skin and tissue in breast reconstruction following a mastectomy. NJ Sharing Network collected more than 100 bras for Women Aware, an organization that helps women facing domestic violence. Pictured with members of our team is Martha Anderson, second from right, Executive Vice President, Donor Services, at MTF Biologics, organizers of BRA Day. 7 Just 18 months after becoming a liver transplant recipient, Chris Klug won a bronze medal in snowboarding at the 2002 Salt Lake City Winter Olympics. Chris visited our headquarters and moderated a panel of patient ambassadors. From left: living kidney donor Brianna Edler-Strand; kidney/pancreas recipient Michael Strusiak; Chris, founder of the Colorado-based Chris Klug Foundation; Dr. Francis Weng, Program Director and Director of Transplant Research in the Renal & Pancreas Transplant Division at Saint Barnabas Medical Center; and Patti DiSanto, mother and caregiver of a transplant recipient. 8 As part of our education and outreach efforts, NJ Sharing Network made a presentation about donation to future nurses at William Paterson University.
10 9 In celebration of National MVC Appreciation Week, our organization
presented New Jersey Motor Vehicle Commission Chair and Chief Administrator Sue Fulton, second from right, with a banner recognizing NJ MVC’s commitment to saving lives through organ and tissue donation.
10 Clara Maass Medical Center celebrated National Donor Day by
holding several events on its campus to educate employees, patients and visitors. NJSharingNetwork.org • CIRCLE OF LIFE 2020 9
IN THE COMMUNITY
Multicultural communities have the power to save lives With a greater diversity of donors, we can increase access to transplantation for everyone! Check out NJ Sharing Network’s #DonationNeedsDiversity initiative in action in communities with the greatest number of patients waiting. The initiative is funded by the Joseph D’Addio Fund.
ST E EA ANG OR
RK WA NE At the Live Healthy and Move health fair in Newark’s Military Park, we promoted healthful living and disease prevention to decrease the need for transplantation.
Thanks to our partnership with Walgreens, we raised awareness in communities with the highest number of patients waiting for a transplant.
Y SE JER CITY
To underscore the critical need for people from diverse communities to register as organ and tissue donors, we invited key influencers to lead a special forum, “Let’s Talk About Donation.”
You can never be too young to Support Organ and Tissue Donation!
National Minority Donor Awareness Week kicked off with a Cultural Potluck Luncheon honoring the generosity of multicultural donors and their families.
Why #DonationNeedsDiversity • Nearly 4,000 people in New Jersey are currently waiting for a life-saving transplant—66% are people of color. • There’s a higher incidence in minority populations of conditions which can lead to the need for a kidney transplant, such as high blood pressure and diabetes.
10 2020 CIRCLE OF LIFE • NJSharingNetwork.org
•O rgans aren’t matched by race or ethnicity. However, compatible blood types and tissue markers—critical qualities for donor/recipient matching—are more likely to be found among members of the same ethnicity. To learn more and get involved, go to NJSharingNetwork.org/ Donation-Needs-Diversity.
COVER IN THE STORY COMMUNITY UPDATE
The Power of Positivity While waiting for a life-saving lung transplant, Dawn Burke kept a “don’t worry about a thing” attitude. When Dawn Burke appeared on the cover of NJ Sharing Network’s Circle of Life magazine in early 2019, she had been on the waiting list for a lung transplant for more than a year. She was relying on oxygen therapy, as well as the power of prayer and positive thinking. Dawn later came to the organization’s all-staff meeting to share her story. That day, she could hardly take a few steps without losing her breath. When the first DAWN BURKE, lung potential donor match had been transplant recipient found, members of NJ Sharing Network’s team who had come to know her waited anxiously to hear the outcome. It was not her time for transplant, but typical of Dawn, she never lost hope. Then in June, a second call came! Dawn underwent life-saving lung transplant surgery at Newark Beth Israel Medical Center in Newark, NJ. In the operating room, her transplant team played Bob Marley’s “Three Little Birds”—subtitled “Don’t Worry About a Thing”—in honor of Dawn’s love for music, particularly reggae. “I could never say enough how grateful I am for my donor and my medical team, family, friends and neighbors who helped me and supported me, and I want to pay it forward,” she said. “I’m trying to
find my purpose, and I think it’s to share my journey with others.” A glowing and healthy Dawn returned post-transplant to NJ Sharing Network’s headquarters, where she was greeted by the staff with hugs and tears of joy. She plans to participate in the 2020 Donate Life Transplant Games, as well as become a Certified Volunteer and continue to help raise awareness about donation. Her favorite affirmation says it all: “No matter how you feel— get up, dress up, show up and never give up.”
LOOK AT ME NOW! Dawn inspires and gives hope to patients waiting for a transplant.
Green With Love Dr. Vincent “Vinnie” Buddle and Amy Buckiewicz, who married on October 26, 2019, were featured in the Spring/Summer 2017 article, “One Band, Many Bonds.” At the time, Vinnie, the son of a living kidney donor (Foundation Board Member Dr. Patrick Buddle) was dating Amy, sister of organ and tissue donor Dan Buckiewicz and daughter of Jane Buckiewicz, a member of our Foundation Board. When Amy first caught Vinnie’s eye, the fact that they were both wearing green “Donate Life” bracelets was the perfect excuse to spark a conversation. Three years later, the bracelets which brought them together were a special part of their wedding day, explained Amy: “The green bracelet has been very important to both of us before we ever met. For me it symbolized the legacy of my brother, and for Vinnie, the gift of life given by his father. Now, the bracelet symbolizes so much more than that. It was truly special to see our wedding guests wear the bracelets during our reception. It allowed us many moments to remember Danny, to honor Pat, and to celebrate the special bond that our friends and families now share through organ and tissue donation.” NJSharingNetwork.org • CIRCLE OF LIFE 2020 11
IN THE COMMUNITY
Chaplain Witnesses Miracle of Donation When a 12-year-old boy from his town was struck by a car while riding his bicycle, Rev. David Cotton prayed for his recovery. He remembers walking along the boardwalk in Ocean Grove—angry he did not get the miracle he requested—when he heard God ask him, “What do you think happened when the boy saved lives as an organ donor?” “I’ve seen organ donation as miracle work ever since,” said Rev. Cotton, who has served as the chaplain of Jersey Shore University Medical Center for more than 25 years and is a staff member at Manasquan Presbyterian Church. Rev. Cotton works alongside the hospital staff to support and bring comfort to those facing end-of-life decisions of a loved one. When family members are approached about donation, he is often part of the collaboration and conversation with NJ Sharing Network.
“Organ and tissue donation is the foundation when everything else is crumbling, something for them to stand on and rebuild their lives.” Rev. David Cotton, Chaplain Jersey Shore University Medical Center “I think it’s true ministry when I’m able to help families on the worst days of their lives find something to hang on to,” he said. “Organ and tissue donation is the foundation when everything else is crumbling, something for them to stand on and rebuild their lives.” The pastor presides over donor remembrance observances held in the hospital’s garden, as well as flag-raising ceremonies performed each time someone gives the gift of life at Jersey Shore University Medical Center. He’ll say a prayer or read a poem with the donor’s loved ones at his side. “When we see that flag waving,” he said, “we know that something good has come out of something really bad.”
Funeral Directors Share Experiences Advocating for Donation Most families who consent to their loved ones giving the gift of life do so in a hospital setting. From time to time, however, a funeral director helps guide a family in making the decision. When a mother explained to Bob McCracken, manager of Smith-McCracken Funeral Home in Newton, that she had not spoken to a representative from NJ Sharing Network because her son did not pass away in a hospital, Bob called the medical examiner and made the referral. The young man went on to be a full tissue donor and helped restore health to many lives. “As longtime supporters of NJ Sharing Network, our funeral directors have the unique opportunity to share information about organ and tissue donation with families when a death occurs, especially when death occurs outside of the hospital setting,” Bob said. “In the funeral
industry, we should all make it a priority to join with NJ Sharing Network to share information about the critical need for organ and tissue donation.” Ernesto Alvarez, director of Funeraria Alvarez, with locations in Passaic and Paterson,
“We appreciate that organ and tissue donation is a wonderful way to help somebody.” Ernesto Alvarez, Director Funeraria Alvarez
Served With Love NJ Sharing Network is fortunate to collaborate with a supportive group of hospital partners around the state. One of the many caring ways that team members at Hackensack Meridian Health’s Ocean Medical Center help energize our team’s efforts is by providing them with a special welcome meal and treats upon their arrival. Special thanks to, from left, Jenny Cleary, Operating Room Surgical Technician, Karyn Adams RN, BSN, CNOR, and Christine Conner DNP, APRN, CCRN, CCNS Magnet Program Director. 12 2020 CIRCLE OF LIFE • NJSharingNetwork.org
is also an advocate for donation. Ernesto shared how he once handled funeral arrangements for a family who had consented to donation but then rescinded. The family was concerned that donation would hold back their daughter’s funeral services. Ernesto, who has been in the funeral business since 1987, assured them that if they consented there would be no delay. The donor saved three lives with her gifts. “We let the family know it does not affect the services at all,” Ernesto said. “Our staff is welltrained and we appreciate that organ and tissue donation is a wonderful way to help somebody.” Thank you to all our funeral home partners for the important role you play in our lifesaving mission.
Remembering a Champion for Living Donation Dr. Shamkant Mulgaonkar was a transformative leader in the field of kidney transplantation. Dr. Shamkant Mulgaonkar, a member of the NJ Sharing Network Advisory Board and dear friend of our organization, passed away in April 2019. Dr. Mulgaonkar left an indelible mark in the field of kidney transplantation. For many years, he served as Chief of the Renal and Pancreas Transplant Division for RWJBarnabas Health. Through his guidance and leadership, the Living Donor Institute at Saint Barnabas Medical Center grew to be one of the largest transplant programs in the country, and one of the most respected in the world.
When he received an NJ Biz Healthcare Hero Award, it was written, “Dr. Shamkant Mulgaonkar, in a word, is beloved. His patients and their families, his staff and colleagues and everyone who has had the good fortune of knowing him readily share the same sentiment. He exemplifies this prestigious award not for his academic and career accomplishments, which are certainly many, but for the human touch that he brings to his work.”
NJ Sharing Network Volunteers In Memoriam We fondly remember these bright stars who passionately advocated for donation. Volunteer Adele Albanese became wellknown in her community when her daughter, Donna Albanese De-Mair (5K Celebration of Life Chair, New Providence), saved her life through living kidney donation. Adele was active with the Live from Surgery program at Liberty Science Center.
Youth advocate Devin McQueen was five years old when he received a rare intestinal transplant. He is pictured on our promotional van and his story was part of the Organ and Tissue Donation Exhibit at Liberty Science Center in Jersey City.
Grace Giles advocated passionately for donation alongside her husband, Judge F. Michael Giles, Foundation Board Member. She honored the memory of their son, Dr. Randall Giles, an organ and tissue donor.
Mool Singhi began participating in the 5K Celebration of Life while waiting for a life-saving kidney transplant, which he received in 2017. Mool served as Team Captain of Morris Miracles and was an active member of the Morris County Donate Life Group.
John Robert “Bob” Keller received a life-saving kidney transplant from a living donor, his wife, Connie. Bob advocated passionately for donation and was an active member of the Morris Donate Life Group.
Heart transplant recipient and donation advocate Claude White was one of the distinguished guests at the Montclair Film screening/panel discussion of A Question of Faith, a film about donation produced by his niece, Angela White.
Heart transplant recipient Jessica Melore was an inspiration to all who knew her. In addition to living 20 years with a transplant, she was a leg amputee and three-time cancer survivor. Jessica volunteered for NJ Sharing Network and traveled the world as a motivational speaker. NJSharingNetwork.org • CIRCLE OF LIFE 2020 13
COVER STORY
A
s hosts of the 2020 Donate Life Transplant Games, NJ Sharing Network invites you to celebrate all that transplantation makes possible, honor those who gave the gift of life and their families, and raise awareness of organ, eye and tissue donation and transplantation.
WHAT
Transplant Games of America—More than 20 competitions and 25+ special events
WHEN
July 17–22, 2020
WHERE
American Dream, The Meadowlands, Prudential Center, NJPAC and other exciting New Jersey venues
HOW DO I PARTICIPATE?
Transplant recipients, living donors and donor families from New Jersey, New York and Connecticut (along with 40 teams from across the country) will participate in the Games as part of Team Liberty. From tennis to trivia, dancing to darts, there are plenty of fun and friendly events to choose from in different competitive levels and age groups. In 2020, for the very first time, donor families are invited to compete in special medaling events.
To learn more and join Team Liberty, go to GoTeamLiberty.org. Already a Team Liberty Member? Sign up to participate at TransplantGamesofAmerica.org.
14 2020 CIRCLE OF LIFE • NJSharingNetwork.org
Honoring the Journey 2020 Donate Life Transplant Games participants share their stories The 2020 Donate Life Transplant Games will be the fifth Games for 84-year-old BASIL VOROLIEFF, a liver recipient who has brought home a total of seven medals. The Transplant Games provide Basil an “absolutely awesome” way to celebrate his second chance at life while honoring his donor’s gift. In fact, the Games are what connected him to his donor family. Basil had written to his donor family about every six months since receiving his life-saving transplant in 2009. After the 2012 Games in Grand Rapids, where he medaled in golf, he shared the news in a letter and promised if he ever received another medal, he would send it to them. At the 2014 Houston Games, Basil decided to try his hand at darts, and to his surprise won two golds. As promised, he sent one to his donor family as a symbol of his gratitude. “Within a week, I came home to a voicemail asking if I was the Basil who sent a medal. I listened to the message three or four times before working
up the courage to call back,” he said. “That’s when I learned my donor’s name—Sylvia— and that she had worked for the telephone company and was a woman of deep faith.” In turn, Basil shared his journey. The retired advertising and marketing executive contracted a liver disease in the 1980’s which would later be identified as Hepatitis C. After treatment, the virus was cleared, but he was left with a high risk of developing liver cancer, which he did. A transplant would be his only hope for survival. Within months after the life-saving surgery, Basil was amazed to find himself back on the ski slopes. “It was such an uplifting experience. It said to me, ‘God, I’m almost normal,’” he recalled. “It reaffirmed that I was still a whole human being.” Since Houston, Basil has won another four medals in darts and corn hole. He’s ready to make New Jersey proud at the 2020 Games,
Greta
Basil
just a short drive from his Hawthorne home. His training begins with borrowing a dart board from his daughter, Laura—who he admits taught him all he knows and beats him every time. But the Games are about much more than winning. “Even more so than the competition and the camaraderie, I always look forward to the donor tribute ceremony,” Basil said. “I wouldn’t miss the opportunity to honor Sylvia for saving my life. The donors are the real heroes of the Games.” Although Basil has shared his story with individuals and groups countless times, he still gets emotional talking about his experience. He often shares a sentiment he first heard from his hepatologist, Dr. Robert Brown, “I think everyone wants to do something that’s heroic in their lifetime. What would be more heroic than becoming an organ donor and making your last act on earth saving a life?”
Each year on January 16, GRETA CLAUSEN celebrates what she calls her “Heart Day”—the anniversary of the heart transplant she received when she was eight-months-old. On “Heart Day,” Greta and her family have dinner at the restaurant of her choice and her mom bakes a special cake. “We celebrate her and her donor family. We don’t give her gifts, because the gift is her heart,” explained Michelle Clausen, Greta’s mother. Greta will be 13 when she competes in bowling and corn hole at her first Games this summer. Mostly, she looks forward to demonstrating to the world how she is thriving and giving hope to those waiting for a transplant. “She’s doing great and really doesn’t have any restrictions,” Michelle said. Greta and her twin brother were born at 38 weeks and spent a short time in the NICU. A seemingly healthy baby, Greta was fussy and missing milestones. One night, she swelled up and was rushed to the hospital. That’s when doctors diagnosed her with a genetic cardiomyopathy which resulted in heart failure. Almost immediately, she was placed on the transplant waiting list. “I remember the cardiology team coming in and saying she was very sick,” Michelle said. “The staff was great. They put us in touch with other parents of heart transplant patients. We were trying to get into a routine, and in about two weeks we got the call. It all happened very, very quickly.” Michelle and her husband, John, are teaching Greta the importance of telling her story and how raising awareness helps others. She joins her mother who speaks to groups and volunteers at health fairs, and she captains Team Greta at the 5K Celebration of Life. Aside from periodic biopsies and her daily medication regimen, Greta is your typical teen who loves to spend time with family and friends and looks forward to One of the many kid-friendly events at making money babysitting. She the Games will be the Youth Olympiad uses her Instagram account— on Saturday, July 18, from noon to @GretasSpecialHeart—to share 3:00pm at American Dream. Come her journey. Her first post shows cheer for transplant, tissue and bone her preparing to have blood drawn marrow recipients ages 10 and under with the caption, “I have to get as they celebrate their gifts with an blood work sometimes to check obstacle course, 50-yard dash and my medication to keep me healthy. other fun competitions. It’s no big deal.”
Youth Olympiad
NJSharingNetwork.org • CIRCLE OF LIFE 2020 15
COVER STORY
Lakisha
HONORS PROGRAM The Transplant Games of America offer a caring and supportive community for donor families to honor their loved ones and share their stories. Check schedule for special donor family events.
“…the single and most profound healing experience we’ve had since Andrew’s passing.” —The Jova Family In loving memory of son and brother, Andrew, who saved five lives as an organ donor
LAKISHA BRAY will honor the memory of both her daughter, Talea, and her sister, Tabitha, at the 2020 Games this summer. Talea was born with cerebral palsy and overcame many obstacles in her life. She loved to cook, adored babies and always carried a pocketbook full of candy. When she passed away in 2014 at the age of 20, Lakisha and her
family agreed organ donation would be an incredible legacy for the young woman who touched so many with her beautiful smile and kind nature. Talea was able to save three lives with her gifts. “She came into the world a miracle and left the same way,” Lakisha said. The belief that “God took his best to answer a prayer request” has helped the mother overcome her grief.
Just six months after Talea died, Lakisha lost her younger sister who had been battling an illness and was on the waiting list for an intestinal transplant. Talea and her aunt shared a unique bond. “They’re the reason I am part of NJ Sharing Network and advocate passionately for donation,” she said, “I have cleared my calendar for the Games and am excited to help out in any way I can.” The Plainfield resident came to believe in the power of donation at a young age. When she was a teenager working as a candy striper, she remembers helping someone who needed a transplant. She always said if anything ever happened to her, she wished to be a donor. “I am focused on bringing awareness to donation by educating others about what it means to be an organ donor,” Lakisha said. “Just because someone is not here, they can live on in others through the gift of life.” n
Don’t Miss These Key Events!
JULY 18
JULY 19
JULY 17–22
OPENING CEREMONY
DONOR FAMILY TRIBUTE
TRANSPLANT GAMES OF AMERICA VILLAGE
Saturday at 7:00PM Prudential Center Newark
Sunday at 1:30-3:00PM and 5:30-7:00PM NJ Performing Arts Center Newark
American Dream East Rutherford
For complete schedule and up-to-date information, go to TransplantGamesofAmerica.org. 16 2020 CIRCLE OF LIFE • NJSharingNetwork.org
PRESENTED BY
HOSTED BY
MEDIA PARTNERS IN PARTNERSHIP WITH
LEADER
CHAMPION
RUBY
PLATINUM
GOLD
SILVER
BRONZE
COPPER The Joseph S. Roth Fund
SUPPORTER
FRIEND
Interested in supporting the Transplant Games of America? Go to NJSharingNetwork.org/TGA to view all sponsorship opportunities.
*As of March 20, 2020.
NJSharingNetwork.org • CIRCLE OF LIFE 2020 17
RAISING FUNDS AND AWARENESS
Memorable Moments from the 5K Celebration of Life Together, we honor those who gave, pay tribute to those who received, offer hope to those who continue to wait and remember the lives lost while waiting for the gift of life.
Two Events, More Than 10,000 Participants
Medalists
Much More Than a 5K
Congratulations to 2019 Top 10 Fundraising Teams 5K Team Name
Team Captain
In Tribute Of
Total Raised
1
Team Luke
Chris Bautista
Luke David Bautista
$ 55,604.56
2
Team Buck
Amy Buckiewicz
Dan Buckiewicz and Joyce Novotny
$ 24,095.75
3
Maeve The Brave
Michele Williams
Maeve Behan
$ 22,770.00
4
Team Hailey
Janet Palumbo
Hailey Palumbo
$ 19,400.00
5
Run for Your Life
Swati Rao-Engel
Charlotte S. Bashforth
$ 15,960.00
6
Team Courtney
Kristina Dayback
Courtney Dayback
$ 13,515.00
7
Team RB
Christine Linton
Robert Bruce Linton III
$ 12,725.00
8
Forever Young
Jessica Nardi
Annie Young
$ 10,337.00
9
Just Do It in Celebration of Joe D'Addio
Alberta D'Addio
Joe D'Addio
$ 10,010.00
10
Max's Mitzvah Movers
Max Prince
Sam Prince
$ 9,710.00
NOTE: Teams highlighted blue participated in Long Branch and teams highlighted green participated in New Providence.
18 2020 CIRCLE OF LIFE • NJSharingNetwork.org
A Decade of Celebrating Life This year, we will celebrate the 10th Anniversary of the 5K Celebration of Life and it sure has lived up to the slogan we gave it a few years back. “It’s more than a 5K, it’s a celebration of life.” Amanda Tibok, Assistant Director, Philanthropy and Foundation Programs, reflects, “The 5K Celebration of Life has become a beautiful and meaningful way to celebrate life and honor those connected to our mission. Whether you have participated every year or plan to join us for the first time in 2020, we are thankful for your support and for sharing your stories, passion, dedication, and most of all, your love.”
You’ve Made it All Possible!
The first 5K Celebration of Life was held in 2011 at our headquarters in New Providence. At the time, we could not have imagined the incredible impact this special gathering would have on the donation community.
Nearly
75,000 attendees
More than
$8 million raised to support our life-saving mission
16 events 20,000+
volunteer hours contributed
throughout the years
150,000
miles logged by runners and walkers
Countless hugs
From
201
teams in 2011 to
377
teams in 2019
What is the most effective way to grow your 5K team and get support from your local community? “Growing our team has been as simple as inviting our community to join us. Many people are happy to participate when they feel our passion for the cause. Be big, be bold and be brave.” Donna Albanese-DeMair New Providence Chair Captain of Team DQ Living Kidney Donor to her mother, Adele, (Pictured with radio host Greg T.)
5K Chairs
Our Staff and Volunteers
Celebrate with us at both events! Visit NJSharingNetwork.org/5K for up-to-date information.
“I mostly build our team through social media and local team events. It doesn’t have to be huge; just think of something relevant to your team and invite your friends and family.” Chris Bautista Long Branch Chair Captain of Team Luke Father of organ and tissue donor, Luke NJSharingNetwork.org • CIRCLE OF LIFE 2020 19
RAISING FUNDS AND AWARENESS
NAMED FUNDS
Two Brothers, One Liver
Riley’s Dance was created in memory of five-yearold Riley Kogen who saved the lives of two women who received her kidneys. The fund seeks to improve the quality of life for recipients and their families in need of financial assistance. Since its inception, Riley’s Dance has touched over 400 families through crisis funding, providing assistance with medications and equipment, transportation, insurance premiums, rent, utilities and other critical needs pre- and post-transplant. Thanks to The Joseph D’Addio Fund, members of our clinical team attended “The Carousel of Hope and Healing,” a three-day NeuroLinguistic Authorization Training. Among those who benefited from the program was Clinical Donation Specialist Alana Barouch, who said, “The training gave me the understanding, skills and confidence I needed to effectively speak with potential donor families in their darkest hours. Because of the training, I am able to walk into a complex, emotional situation, and know how to break it down to give families support, clarity and the powerful opportunity for their loved one to give the gift of life.”
With The Wave Set—our newest named fund—brothers Cameron and Jared Wohl share the story of their remarkable bond and bring awareness to the importance of donation. At 13, Cameron was diagnosed with a rare autoimmune disease primarily affecting his liver. About a decade later, he was placed on the transplant waiting list. Fearing a long wait, his brother, Jared, jumped at the chance to be his living donor and saved his life. In addition to raising funds through special events and the sale of The Wave Set merchandise (Wave = We Are Vital to Each Other), the young men from Morris Plains created 65 Percent, a powerful documentary on their family’s journey through the most challenging time of their lives. The film will be shown at future programs to build awareness and start the conversation about donation.
The days of more than 100 transplant recipients and their caregivers were made a little brighter when they received care packages from Jellybean’s Rainbow Walks with Mickey. The fund has provided all six NJ transplant centers with lovingly prepared packages—containing essential oils, hand sanitizer and lotion, as well as Starbucks gift cards and fuzzy socks—to support a stress-free posttransplant experience. Jellybean’s Rainbow Walks with Mickey honors the memory of Lisa, who passed away waiting for her third liver transplant, and Mickey, a double-lung transplant recipient.
Thank you to all of our named funds for supporting the 2020 Donate Life Transplant Games.
2019-2020 Scholarship Awardees
NEW! Scholarship for Newark Students Current high school seniors from Newark, whose lives have been touched by organ and tissue donation and transplantation or are advocates, are encouraged to apply. For more information, contact us at scholarship@njsharingnetwork.org.
DONATION has touched the lives of these students in many ways. From left: Nancie Rothman of the Hearts for Emma Partner Fund with awardees Aashi Faldu and Christopher Piccininni; awardee Michael Snyder with Dan Sarnowski of the Betsy Niles Scholarship Fund; and awardee Kayla Flanders with Missy Rodriguez of the Missy’s Miracle Scholarship Fund. Not pictured: Betsy Niles Scholarship Awardee Amelia Langan and Missy’s Miracle Scholarship Awardee Devin Norton. Applications for 2020-2021 scholarships (due June 1, 2020) are available at NJSharingNetwork.org/Scholarship.
20 2020 CIRCLE OF LIFE • NJSharingNetwork.org
FEATURED CONTRIBUTOR
Giving Back Adds Up for Math Tutor
ANSHUL GUHA (center), who raises money for our Foundation by tutoring, with Ametra D. Burton (left), Philanthropy and Foundation Programs Coordinator, and Amanda Tibok, Assistant Director, Philanthropy and Foundation Programs
When Montgomery High School student Anshul Guha was diagnosed with a degenerative eye condition, he was briefly considered as a candidate for a corneal
transplant. Ultimately, Anshul’s doctors decided to perform a procedure to prevent his vision from getting further distorted. The procedure was successful, and he would not need a transplant after all! Still, the experience deepened the teenager’s appreciation for the sacrifice made by organ and tissue donors, and he felt a strong need to give back. In the summer of 2019, after becoming a NJ Sharing Network Certified Volunteer, Anshul started “Countdown,” a lowcost tutoring service through which he helps students struggling in math and science. Anshul has committed to contributing all the proceeds to our Foundation and has already raised over $5,000 for our life-saving mission. “I truly hope every child who is eager to learn more can do so through Countdown,” Anshul said. “I would like to expand the program’s scope and add more instructors willing to tutor students in exchange for donating to a cause that is close to their heart.”
Flower Power Sunflowers, sparkles, stickers. What’s not to love about Sadie Alfano’s mitzvah project? To honor her cousin, Cassidy, a doublelung transplant recipient, 13-yearold Sadie from Demarest created these stickers and sells them to raise money for our Foundation. She has already raised over $4,000! Why a sunflower? One sunflower seed has the potential to bloom, grow and create countless other seeds. So, too, does the gift of life through organ and tissue donation. To purchase stickers, which are $3.75 each, go to StickerBeans.com and search for “Sadie’s Sunflower.”
FUN IN THE SUN More than 100 golfers and a dozen tennis players joined us on a beautiful day to promote organ and tissue donation at the 22nd Annual Golf Classic and Tennis Tournament. The event took place at the premier Ridgewood Country Club in Paramus. A big thanks to our presenting sponsor, RWJBarnabas Health, and our presenting tennis sponsor, Eastwick College.
For information on the 22nd Golf Classic and Tennis Tournament to be held on Monday, October 12, 2020, go to NJSharingNetwork.org/Golf.
Celebrating Generosity Twenty three names were added to our Landscape of Life Wall on leaves and butterflies and our Wall of Contributors was updated to reflect 2019 giving. The Landscape of Life is a tribute giving wall created as a special place to honor organ and tissue donors, transplant recipients and members of the community, while acknowledging contributions made in their honor. Leading contributors and advocates are recognized on our Wall of Contributors. NJSharingNetwork.org • CIRCLE OF LIFE 2020 21
HONORING FAMILIES
Meeting Son’s Recipients…
‘Meant the World to Us’ When Alexander Patriarca of Point Pleasant gave the gift of life at the age of 24, his parents Michael and Lucy Patriarca hoped to one day meet the recipients of their son’s gifts. With the assistance of NJ Sharing Network, the Patriarcas have had the opportunity to unite with two of the four individuals whose lives Alex saved. In December 2019, at NJ Sharing Network’s headquarters, they met with his heart and kidney recipient, Bill Hoffman. Surrounded by family and friends, they greeted one another with hugs and tears, exchanged small gifts, and took turns listening to Alex’s heart beat in Bill’s chest. Two months later, they united with Alex’s lung recipient, Ed Walsh, and his wife, Tammy. The day Alex died was their son’s birthday, they explained; his father’s restored health was the best gift the young man ever received. “Out of our tragedy those families had a triumph,” said Michael. “I think it’s important that we got to connect with them and understand their stories.” The occasions also gave the Patriarcas a chance to tell them how Alex was a loving and giving person who excelled at sports. He was an amateur boxer, a bartender and had a half-year left of college. “It means the world to us that they were willing to meet,” Lucy said. Connecting Transplant Recipients With Donor Families As part of her Family Support Coordinator role, Jackie Salvatore facilitates anonymous exchanges between transplant recipients and donor families. On the rare occasions they agree to meet, she encourages families to gather at our headquarters. “We provide a comfortable setting and help families navigate the difficult emotions these meetings conger up,” Jackie said. “I assure transplant recipients that every donor family wants the recipient to live on, have a good life and succeed.” As for donor families, she said, “They get to see the person that’s living because JACKIE SALVATORE, of their loved one. I think it brings a lot of Family Support Coordinator healing on both sides.” Throughout the year, Jackie leads a series of grief workshops for donor families (page 24). 22 2020 CIRCLE OF LIFE • NJSharingNetwork.org
Journey to Pasadena By Brenda Sorrentino, whose son, organ and tissue donor Brad Sorrentino, was a Floragraph honoree on the 2020 Donate Life Rose Parade Float.
When Bridge to Life chose Brad to be honored with a floragraph to be placed on the Donate Life Float at the Rose Parade in Pasadena, California, I was overwhelmed with emotions—joy, sadness, fear and happiness. I would do anything in life for my child, so in death I would be there to honor him as well. Wasn’t sure of the life-changing part that everyone talked about. Losing my son was life changing, how could this parade experience be life changing? I was skeptical. Having seen Brad’s floragraph at the unveiling, I thought I was prepared to see it at the float decorating ceremony. Never could I have imagined seeing him front and center looking straight at me. Smiling. Full of life. I felt the gaping hole in my heart re-open. I fell to my knees and before I could breathe someone lifted me up and held me sobbing in her arms until I could take a deep breath. When I opened my eyes, a woman with tears streaming down her face took my face in her hands and said, “Darling, I understand, I understand.” She whispered, “Would you like to give your son one last kiss?” My heart swelled with joy. She helped me onto the float … I gave him one last kiss … and this was the beginning of my life-changing realization. That evening, my family and I returned to the float for one last picture as a family. A gentleman asked if I would like to place a red rose—symbolic of everlasting love—on the float for him. I placed it directly under Brad’s floragraph. I have learned I will never stop grieving just as I will never stop loving my son. This is for sure … he will live on through organ and tissue donation. As the 2020 parade theme, there is “Light in the Darkness.” Three-and-a-half years ago when Brad died, I shut down. I lost my voice. Today, I can say I have found my voice again.
2020 Rose Parade Honorees and Sponsors Floragraph Honorees
Float Rider Honorees
John Cuffe, Donor Dignity Memorial
Michael DiPiano, Transplant Recipient Team Liberty
Brad Sorrentino, Donor Bridge to Life Ltd. Hope Wolf, Donor NJ Sharing Network
Sam Prince, Transplant Recipient NJ Sharing Network
SAVE THE DATE
2020 JOIN US
…in our mission to save lives.
April
IS NATIONAL DONATE LIFE MONTH
National Donate Life Month will be celebrated virtually this year! Check your email and Facebook.com/NJSharingNetwork for our 30 days/30 ways to get involved calendar. There will be many opportunities to encourage members of your community to register as organ and tissue donors and celebrate those who have saved lives through the generous gift of donation. Nothing will stop us from making this year’s Donate Life Month a huge success!
MAY th 8
WRAPPED IN LOVE
NJ Sharing Network Headquarters New Providence, NJ On Friday, May 8, from 11:00am to 1:00pm, volunteers will help package shawls, lap blankets and scarves for donor families. A Knit Night for knitters and crocheters will be held on Wednesday, May 13, from 4:30-6:30pm. To learn more, contact Lisa Colasurdo at lcolasurdo@njsharingnetwork.org or 908-516-5687.
To learn more, go to NJSharingNetwork.org/DLM.
17
th 5K CELEBRATION OF LIFE Long Branch, NJ
Together, we honor those who gave, pay tribute to those who received, offer hope to those who continue to wait and remember the lives lost while waiting for the gift of life. To sign up, go to NJSharingNetwork.org/5K.
The image for National Donate Life Month 2020 was inspired by the springtime scene of a garden. A garden, like the Landscape of Life Meditation Garden located at our headquarters, serves as a symbol of hope, courage and transformed life.
17
th
BLUE AND GREEN DAY Show your spirit and support by wearing blue and green—the colors of donation today and all month long! Be sure to share on social media and send your best photos to socialmedia@ NJSharingNetwork.org for our Facebook album.
JUNE th 7 th 16
5K CELEBRATION OF LIFE NJ Sharing Network Headquarters New Providence, NJ
To sign up, go to NJSharingNetwork.org/5K.
TEAM LIBERTY GOLF OUTING
Galloping Hill Golf Course | Kenilworth, NJ Join Team Liberty for the “18 for 8” outing and help support organ and tissue donation. For more information, contact Mike Strusiak at 201-870-2496 or mike@schripps.com.
These events were scheduled at the time of printing. Please check our social media and website for updates. NJSharingNetwork.org • CIRCLE OF LIFE 2020 23
SAVE THE DATE
JULY th 17
2020 DONATE LIFE TRANSPLANT GAMES
to
22
nd
The 2020 Donate Life Transplant Games will be the biggest and boldest ever, with 12,000-15,000 people expected to attend this biennial multisport festival recognizing the success of donation and transplantation and honoring the generosity of donors and their families. To compete, volunteer or sponsor, go to NJSharingNetwork.org/TGA.
ADVOCACY NIGHTS NJ Sharing Network Headquarters | New Providence, NJ Wednesday, August 19 Tuesday, September 22
Thursday, October 22 Monday, November 16
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 entire evening. Meet fellow members of the donation and transplantation community, tour our state-of-the-art facility, and learn how to participate in our various community education programs. To learn more and sign up, visit NJSharingNetwork.org/Advocacy-Night.
AUGUST NATIONAL MINORITY DONOR AWARENESS MONTH NJ Sharing Network’s #DonationNeedsDiversity initiative empowers multicultural communities to save and heal lives through organ and tissue donation. To learn more, contact education@njsharingnetwork.org or go to NJSharingNetwork.org/Donation-Needs-Diversity.
OCTOBER th 12
22ND ANNUAL GOLF CLASSIC AND TENNIS TOURNAMENT Ridgewood Country Club, Paramus, NJ Join us for an unforgettable day at one of New Jersey’s premier private golf courses. To sign up, go to NJSharingNetwork.org/Golf.
NOVEMBER th 13
NATIONAL DONOR SABBATH
to
15
th
Observed annually in November, this initiative seeks to educate faith-based communities across the country about the critical need for organ and tissue donation, and the vital role their faith plays in making the decision to register as a donor. To learn more, go to NJSharingNetwork.org/ Donor-Sabbath.
CAMDEN BERGEN JOINGREATER A DONATE LIFE REGIONALNEWARK/ESSEX GROUP NEAR YOU! GREATER Volunteer • Educate • Support MERCER MONMOUTH/OCEAN Share Your Story MORRIS SOMERSET/MIDDLESEX SUSSEX/WARREN & UNION NJSharingNetwork.org/Groups
SUPPORT IN TIMES OF GRIEF
Throughout the year, our Family Services Team offers workshops at our headquarters for family members of organ and tissue donors experiencing grief. The Sunday morning meetings offer opportunities to share, listen and honor your loved ones in a supportive environment.
September 20
Bearing the Unbearable: Self Care in Grief
October 18
Death in the Family: Who Are We Now?
November 15
Hope for the Holidays: Healing, Honoring, and Finding Peace in Loss To learn more and sign up, go to NJSharingNetwork.org/Family-Services-Programs.
These events were scheduled at the time of printing. Please check our social media and website for updates. 24 2020 CIRCLE OF LIFE • NJSharingNetwork.org
NJ Sharing Network and our Foundation 2019 Combined Financial Position* Revenue
≈ $53 Million
24%
26% 61%
Transplant Laboratory
Organ Procurement
Grants 3% Contributions, and Other Income
10% AT IO
NS
Tissue Procurement
AL C LINIC
OP
ER
64% 5K Celebration of Life
General and Tribute Gifts
12% 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
≈ $47 Million
Public Education, Awareness and Outreach Transplant Laboratory
48%
6% 4%
S
General Administrative and Fundraising
16%
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, 2019. Excess revenue is invested in the organization for continued sustainability.
NJSharingNetwork.org • CIRCLE OF LIFE 2020 25
NONPROFIT ORG U.S. Postage
691 Central Avenue New Providence, NJ 07974 800-742-7365 • 908-516-5400 NJSharingNetwork.org
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 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. 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. NJ Sharing Network is a member of Community Health Charities. 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.
PAID Union, NJ
Permit No. 931
@NJSharingNetwork @NJSharing @NJSharingNetwork @NJSharing NJ Sharing Network NJ Sharing Network
The Transplant Games of America are Coming to New Jersey
July 17–22, 2020
On Your Mark, Get Set...Volunteer!
Volunteers will be a special part of the action at the Transplant Games—and it takes more than 3,000 to make the week-long festival possible. As a volunteer, you can help behind-the-scenes or on the sidelines during competitions and special events. There's a role for anyone who wishes to be a part of something special.
Volunteer in 3 Easy Steps 1 Register at TransplantGamesofAmerica.org/Volunteer.html 2 Browse opportunities 3 Select dates, times and roles that work best for you. GROUPS ARE WELCOME! Volunteering is a great team-building experience for companies, teams and organizations interested in supporting organ, eye and tissue donation and transplantation.
PROUD HOST OF
Connect with us on
Inside This Issue How to Compete Honor Donors Family Fun at the Games