Circle of Life Magazine: Fall/Winter 2017 by NJ Sharing Network

CIRCLE LIFE of

A Publication of NJ Sharing Network

FALL/WINTER 2017 | Volume 8 Issue 2

HONORING THE PAST

ENVISIONING THE FUTURE

JOE’S CORNER In 2017, we are celebrating 30 years of saving and enhancing lives through organ and tissue donation. It is a time for us to look back on what we have been able to accomplish together. To illustrate the rippling impact of our efforts, we invited individuals to complete the sentence, “Because of Donation…” From weddings to watching grandchildren grow, their answers remind me of why many of us have spent decades dedicated to our life-saving mission (page 6 ).

OUR MISSION

NJ Sharing Network is committed to saving and enhancing lives through the miracle of organ and tissue donation and transplantation. BOARD OF TRUSTEES 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. Bruce Markowitz, ACHE Vito Pulito Ciro A. Scalera Nancy E. Shafer-Winter, MSN, RN, NE-BC, CPHQ Antoinette Spevetz, MD Timothy J. Touhey Charles G. Walker

While our history dates back to 1987, tissue donation was first reported in the late 1800s, when the first skin transplant was performed; it’s where we start our timeline highlighting the milestones of donation as well as the achievements of NJ Sharing Network (page 10). More than just a coincidence? That’s how many of us feel when we make a connection related to donation or witness a sign of hope. We share your inspiring stories in “That’s Incredible!” (page 15). Just a few weeks ago, we presented our hospital partners with more than 50 awards from the Health Resources and Services Administration (HRSA). Their outstanding work advocating for organ and tissue donation is one of the many reasons NJ Sharing Network ranks among the top Organ Procurement Organizations in the country (opposite page). Our 30th anniversary is also a time to look forward and to think about what we want to achieve in the years ahead. There is always more work to be done, more lives to be saved, and more ways we can honor those who gave the gift of life. Congratulations Carolyn!

Ex-Officio Members Joseph Roth, President and CEO John Radomski, MD, Chief Medical Director Mark J. Zucker, MD, Advisory Board Chairman ADVISORY BOARD Mark J. Zucker, MD, Chair Loretta Aigner, RN Gail Clegg Roseann DiBrienza, MS, RN Stuart R. Geffner, MD Michael Gould, MD Sarah E. Jensen, Esq. David A. Laskow, MD James Lim, MD Debra L. Morgan, MSW, LCSW Shamkant Mulgaonkar, MD Trish O’Keefe, PhD, RN John S. Radomski, MD, FACS Prakash Rao, PhD, MBA, FACHE, HCLD Bruce Stroever Harry Sun, MD Dorian J. Wilson, MD FOUNDATION BOARD Marla Bace, Chair Randi Geffner, Vice Chair Philip S. Kolm, Vice Chair Dan Sarnowski, Treasurer Honorable F. Michael Giles, Secretary Peter Rooney, Jr., Immediate Past Chair Cheryl H. Cohen, MBA, FHFMA J.D. de León Victor D. DiSanto Lenore C. Ford Ezequiel Garcia Laura Coti Garrett, MS, RDN Lisa J. Meyers Suzann Rizzo Elizabeth Stamler Bhavna Tailor Ex-Officio Members Joseph S. Roth, President and CEO Elisse E. Glennon, VP and Chief Administrative Officer and Executive Director, Foundation

Joseph S. Roth President and Chief Executive Officer

EDITORIAL TEAM Mara Barlow, Assistant Director, Marketing and Communications Alyssa D’Addio, Assistant Director, Philanthropy and Foundation Programs Amanda Abramo, Manager, Philanthropy and Foundation Programs John Valentine, Manager, Marketing and Communications Carolyn Welsh, Vice President and Chief Clinical Officer Teresa Akersten, Writer/Editor Emily Fitterman, Graphic Designer Send comments to: editor@njsharingnetwork.org

Carolyn Welsh was recently named Vice President and Chief Clinical Officer. Carolyn has more than 18 years of progressive clinical experience. She is leading the Clinical Operations Team as we continue to support the positive momentum which has led to record breaking years for number of lives saved and enhanced through organ and tissue donation in New Jersey.

On the Cover: Transplant recipients, donor families, patients waiting, medical professionals, longtime members of our team, dedicated advocates and volunteers...these faces of donation symbolize the countless individuals whose lives have been touched by our mission.

INSIDE THIS ISSUE

1 4 6

S haring News Recognition for hospital partners, Cover story update, Tales from the World Transplant Games

10 12

I n the Community Celebrating diversity, Thanking our volunteers

C over Story All that is possible “Because of Donation”

Innovations The past, present and future of donation R aising Funds & Awareness Contribute to our Foundation's mission S ocial Media Share your reviews and incredible stories S ave the Date Coming up: 30th Anniversary Gala, National Donor Sabbath

SHARING NEWS

2017 HRSA National Campaign Honorees Congratulations to our partner hospitals NJ Sharing Network is proud to work with some of the most dedicated hospital partners in the country. Nearly all of our NJ hospital partners were recognized at the HRSA National Campaign Awards Presentation held at our headquarters in September. HRSA’s 2017 “Let Life Bloom” campaign used a point system to recognize their efforts to raise awareness and register donors. Points were earned through a variety of activities, such as creating displays at health fairs, participating in Blue and Green Day and organizing teams for the 5K Celebration of Life (just a few examples shown below). The next Hospital Campaign runs from October through April 2018. To get started, contact your hospital liaison.

· 96% of hospitals in our designated service area participated · 29 hospitals earned Platinum Awards— most in the country · 20 hospitals received Gold, Silver and Bronze Awards

GOLD

PLATINUM

Bayshore Medical Center Christ Hospital Hoboken University Medical Center Chilton Medical Center Community Medical Center Mountainside Medical Center Hackensack University Medical Center Holy Name Medical Center Hunterdon Medical Center Jersey Shore University Medical Center Monmouth Medical Center Monmouth Medical Center Southern Campus Morristown Medical Center Newark Beth Israel Medical Center Ocean Medical Center Our Lady of Lourdes Medical Center Raritan Bay Medical Center Old Bridge Raritan Bay Medical Center Perth Amboy Riverview Medical Center Robert Wood Johnson University Hospital New Brunswick Robert Wood Johnson University Hospital Somerset Saint Barnabas Medical Center Saint Clare’s Health

LET LIFE BLOOM Our Hospital Services Managers help educate the staff at our hospital partners about donation. From left, Soon Benham, Deanna Fenton, Amanda Trabilsy, Missy Peck, Regina Cariddi and Hauwa Adeniji. Not pictured: Tina Bezerra and Shanon Abbott. Fall/ Winter 2017

St. Francis Medical Center St. Joseph’s Healthcare System St. Luke’s Warren Hospital The Valley Hospital Trinitas Regional Medical Center University Hospital

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Bayonne Medical Center Clara Maass Medical Center Cooper University Hospital Jersey City Medical Center JFK Medical Center Overlook Medical Center Robert Wood Johnson University Hospital Rahway Saint Michael’s Medical Center St. Mary’s General Hospital University Medical Center of Princeton at Plainsboro SILVER

Capital Health System CentraState Medical Center Englewood Hospital and Medical Center Pascack Valley Medical Center Palisades Medical Center Newton Medical Center Robert Wood Johnson University Hospital Hamilton Saint Peter’s University Hospital BRONZE

Bergen Regional Medical Center Hackettstown Medical Center

SHARING NEWS

Cover Story Update

Sweeter Than Ever The cover of the Fall 2011 issue of Circle of Life magazine shows a woman planting a kiss on another woman’s cheek. The headline, “Sweet Life,” perfectly sums up the story of this mother and daughter, bonded by organ donation. Life has been sweet for Adele Albanese, who just celebrated her 85th birthday and the 15th anniversary of receiving a kidney donation from her daughter, Donna Albanese-DeMair, of Scotch Plains. In May, a birthday celebration for Mrs. A was held at the Dairy Queen the family has operated in Plainfield since 1975. Hot dogs were sold for 85 cents and everyone received a free slice of ice cream cake. One cake was decorated with a photograph of Adele and her husband of 50 years dancing at their grandson’s wedding, just one of many memories made possible by the gift of life. She’s also had the opportunity to travel and watch her six grandchildren grow up. Adele and Donna have been passionate advocates for donation, telling their story at all sorts of venues, from senior centers and nursing schools to pharmaceutical companies and Liberty Science Center, where audiences can view a live transplant operation while asking the surgeon questions. Since they appeared in the magazine, Donna traveled to Pasadena, California for the 2016 New Year’s Day Rose Bowl Parade. She represented living kidney donors across the country as she walked alongside the Donate Life America float. “The whole point was I could donate a kidney and walk 8 miles and it is effortless. It demonstrated my great health,” says Donna, former board chair of the NJ Sharing Network Foundation and current chair of the New Providence 5K Celebration of Life. The parade, along with numerous other television appearances and news stories, have made Adele a recognizable face of donation in New Jersey. “I rarely go somewhere without hearing, ‘You are the lady who got her kidney from her daughter,’” she says. DQ customers often ask questions and share stories over the counter. Recently, a customer told Donna, because of what she learned at the DQ, she was able to intervene and share information with a grieving family, inspiring them to say “yes” to donation.

RIPPLE EFFECT Donna and Adele have inspired countless others. From left, Donna, her DQ team member Sasha Zitofsky and his mom Susan Zitofsky, a kidney recipient who turned to Donna and her mom when she felt hopeless. Susan’s brother was reluctant to become her living kidney donor. After Donna sent him a heartfelt and informative email, he changed his mind and saved his sister’s life.

CALLING ALL LIVING KIDNEY DONORS

NJ Sharing Network will be hosting a special gathering for living kidney donors in November. For more information, contact Michele Dabal at 908-516-5400 or mdabal@njsharingnetwork.org.

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‘YOU DID A GOOD JOB,’ Adele told Dr. Stuart Geffner, who performed her surgery 15 years ago. Dr. Geffner, Director of Transplant Surgery, and Chairman and Surgeon-In-Chief, Department of Surgery, Saint Barnabas Medical Center, was a special guest at her 85th birthday celebration. 2

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SHARING NEWS

Leading the Way

NJ Sharing Network recognized at national, state level MAKING NEWS NJ Sharing Network nominated media partner Bill Ritter, coanchor of WABC-TV New York’s Eyewitness News, for a Crystal Heart Award, which honors broadcasting professionals for their “outstanding efforts to accurately depict the science and reality of organ, eye and tissue donation and transplantation to the public.” John Valentine, Marketing and Communications Manager, NJ Sharing Network, presented the award at the Association of Organ Procurement Organizations (AOPO) meeting in June. From left, Ritter, with NJ Sharing Network President and CEO Joseph Roth and transplant recipients Jill Szalony and Keath Gerald, who Ritter interviewed on his program in 2016.

NJBIZ, a business journal covering New Jersey, presented Joseph Roth, President and CEO of NJ Sharing Network with a 2017 ICON Honors Award. The inaugural award recognizes seasoned business leaders for their notable success and strong leadership within and outside their industry. Congratulations to the many hospital partners who were also honored by NJBIZ 2017 ICON Honor Awards. Roth is representing the organization in three new capacities. He has joined the Board of Directors of the Musculoskeletal Transplant Foundation (MTF), which oversees MTF’s mission to provide the highest quality tissue grafts and advancing the science of transplantation. He was also appointed to the Board of Directors of the New Jersey Chamber of Commerce, where he works to promote a vibrant business climate and helps find solutions to the challenges facing New Jersey’s business community. Finally, he is serving a three-year term on the UNOS Liver and Pancreas Transplantation Committee, helping to set policy for allocating liver and pancreas transplants.

THANKS, PARTNERS Far left and far right, Martha Anderson, Executive Vice President, and Bruce W. Stroever, President and CEO, representing MTF, presented Joseph Roth, President and CEO, Carolyn Welsh, Vice President and CCO and Mike Sheehan, Director of Finance, all of NJ Sharing Network, with an award in recognition of our 30th anniversary. MTF is also celebrating 30 years in 2017.

NJ Transplant Recipients Medal at XXI World Transplant Games

Heart recipient Joe DiSanto, right, with his pétanque partner At age 11, Joe DiSanto was diagnosed with an enlarged heart and was forced to give up all sports. Thanks to a life-saving transplant he has participated in numerous transplant games, winning in Málaga a bronze medal in pétanque, a game similar to bocce, and a silver in ball toss.

New Jersey was well represented among Team USA at the 2017 World Transplant Games held in Málaga, Spain, where 2,500 athletes from 55 nations competed this summer. The World Transplant Games is an international sporting event for organ and tissue transplant recipients, demonstrating the lifesaving success of transplant surgery and the ability of transplant recipients to lead healthy, active lives.

Kidney recipient Jill Morton, left, and liver recipient Michele Dabal

Living kidney donor Reenie Harris

Michele Dabal, a liver transplant recipient and multi-medal winner at the U.S. Transplant Games with Team Liberty, took home a gold medal in doubles tennis and ball toss and a bronze medal in paddle tennis and singles tennis, where she played against teammate, Jill Morton, a kidney recipient. Jill also competed in golf, the 5K run and a relay with Team USA, winning two gold medals.

Living donors and donor families were eligible to compete for the first time this year. Representing the Garden State in the 5K Road Race was Reenie Harris, who in 2013 became the state’s oldest living kidney donor at the age of 70.

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IN THE COMMUNITY

Celebrating Diversity During National Minority Donor Awareness Week (August 1–7), the Joseph D’Addio Fund sponsored multiple events. Clockwise from right: Cookout/Kickball game in Plainfield; E. Denise Peoples, left, helped arrange a Cultural Potluck; and Lunch and Learn at Sanofi in Bridgewater. Organ recipient Keath Gerald and donor mother Patti Jackson, NJ Sharing Network Community Educators, appeared on Irvington Now.

Young Champions for Donation: 2017–2018 Scholarship Winners Four scholarships were presented to New Jersey students whose lives have been touched by organ and tissue donation and transplantation.

Betsy Niles Scholarship Fund

Missy’s Miracle Scholarship Fund

(awarded this year in memory of organ and tissue donor Anthony Lisanti)

(awarded in honor of liver transplant recipient Missy Rodriguez)

Varsha Garla Biotechnology High School/Vanderbilt University Since her father’s kidney transplant, Varsha has become an advocate for donation. She is intrigued by the science behind donation and transplantation, and completed a research paper on the topic. She plans to be a doctor. Emma Rothman Cranford High School/Syracuse University Just 11 weeks after her life-saving heart transplant surgery, Emma walked in the first 5K Celebration of Life. It was the first step on her journey to becoming a champion for donation. Through the Hearts for Emma Partner Fund, she created the educational brochure and video for teenagers, “You Have the Power to Save Lives.”

Max Prince

West Essex High School/Washington University in St. Louis After a complete stranger saved his brother through the heroic act of organ donation, Max became passionate about sharing his family’s story and motivating others to register as organ and tissue donors. He created a 5K Celebration of Life team, Max’s Mitzvah Movers, to honor his brother, Sam. Alexa Sirubi

Northern Highlands Regional High School/Villanova University Alexa, the daughter of an organ donor, turned pain into purpose. Her advocacy efforts include creating a video for students and co-founding a Donate Life Club at her school. To learn more, visit www.NJSharingNetwork.org/scholarship.

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IN THE COMMUNITY

My Donation Connection Nancy Bird,

wife of transplant recipient and Executive Assistant, NJ Sharing Network

Last December, after volunteering and working at NJ Sharing Network in various capacities for more than a decade, I happily accepted the position of Executive Assistant to Joe Roth, our President and CEO. Our mission ties me directly to my beloved late husband, David Bird, a liver transplant recipient.

It comforts me every day to be here. I get to walk down the hall and see his butterfly on the Landscape of Life wall. I find comfort in the serenity of the meditation garden. David and I were so grateful for his second chance at life, we started volunteering with NJ Sharing Network soon after his transplant in 2004. We helped raise awareness anywhere we could, from street fairs and 4-H Club events to hospitals and businesses. In the years after his transplant, David would proudly dress in blue and green, the colors of donation, to compete with Team Liberty at the Transplant Games of America, participate in the NYC triathlon and complete the NYC marathon.

Meanwhile, I started volunteering in the office at NJ Sharing Network, working with Family Services and later became a per diem employee. I embraced the opportunity to give back to this organization which had given so much to David and I, and our two children. Sadly, on January 11, 2014, David went for a walk and never returned. I spent every ounce of energy desperately working to find my missing husband. During this tragic time for my family, NJ Sharing Network wrapped us in love and I am forever grateful. I will never be sure of what happened to David—his body was recovered 14 months later a mile from our house—but I do know how important this organization has been in my healing process. It comforts me every day to be here. I get to walk down the hall and see his butterfly on the Landscape of Life wall. I find comfort in the serenity of the meditation garden. And I can identify with caregivers, recipient families and all who are grieving a loved one and looking for a way to honor their memory.

NANCY AND DAVID BIRD led the 5K Celebration of Life with a kiss.

In Memoriam: Remembering Dan NJ Sharing Network has lost a friend and dedicated volunteer, Dan Weiniger of Westfield, who passed away in July while waiting for a heart transplant. Dan, known as a glass-half-full kind of guy, often said heart failure was a blessing, allowing him to connect with new people and changing his perspective on life. After suffering a near fatal heart attack in 2015, which destroyed 80% of his heart, Dan spent 55 days in three hospitals. He had a remarkable recovery and was able to return to an active life thanks to an LVAD, a left ventricular assist device, which he wore 24/7. As he waited for a heart transplant, Dan became a certified volunteer for NJ Sharing Network. He shared his story with high school students and community groups, and ultimately wrote The Gift of Heart Failure: 12 Fabulous Fundamentals for Turning Obstacles into Opportunities, which was published earlier this year and is available on Amazon.com. The book synopsis reads, “The lessons [Dan] learned are shared with you here and will inspire you to accept ANY given situation or set of circumstances which may, at the outset, seem insurmountable.” Fall/ Winter 2017

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Volunteer Spotlight “Real New Jersey people receive transplants,” Carteret resident Steve Sutkowski often says. For Steve, those people include members of his motorcycle club, police officers, a neighbor and, first and foremost, his wife, Dana. Experimental treatments for leukemia that saved Dana as a child wound up destroying her liver. In 2012, on Mother’s Day Sunday, Dana was sent home from the hospital with a failing liver and no hope of recovering. Miraculously, that Friday, she received a call that a transplant was available, and her life would be saved. The experience inspired Steve to become a certified volunteer with NJ Sharing Network. He sets up informational booths at health fairs and community events, and serves on the 5K Celebration of Life Steering Committee. He jokes that he and his wife have competing teams: Dana’s Liver Lizards and Team Infineum, the latter started by his company. When they aren’t walking, daughter Veronica dons the Ms. Pumps mascot costume and Steve and his motorcycle buddies serve as course marshals. Thank you for all you do, Steve! We are lucky to have you as a volunteer! To become involved as a volunteer, sign up for an orientation at www.NJSharingNetwork. org/Volunteer.

GIVING THANKS During a ceremony in the Landscape of Life Meditation Garden at our headquarters, pinwheels were dedicated to members of our volunteer family who recently passed away: community advocate Karen M. Sohl; recipient Joseph F. Sparone; and recipient Bill Heinz. Pinwheels were this year’s special symbol for Donate Life Month.

COVER STORY

Because of Donation… “I get to go to school everyday and learn, make friends, and play sports!” —Devin McQueen Intestinal Transplant Recipient

Since 1987, NJ Sharing Network’s mission has been to save and enhance lives through the miracle of organ and tissue donation and transplantation. Now, 30 years later, we continue our lifesaving work and celebrate not only our accomplishments, but each and every person who has been touched by our mission— from transplant recipients, to medical professionals to longtime members of our team.

“My son saved five lives and his memory lives on.” —Maria Perez Mother of Organ Donor, Roberto De Jesus Perez Twenty years ago this November, my son, Roberto, passed away at the age of 18 from a brain aneurysm. Through organ donation, Roberto was able to save five lives. It was an incredible honor to see Roberto’s image on the Donate Life float in the Tournament of Roses Parade in California. We continue to tell his story to inspire others to say “yes” to donation. By sharing Roberto’s legacy, in a way he is still with us.

After spending my childhood under intensive care, I was given a second chance at life on February 22, 2009 at age 5 when I underwent a rare intestinal transplant surgery. I had been dependent on a feeding tube since infancy and could for the first time eat food! I’m now 14 and in high school and am proud to have been named valedictorian of my 8th grade class.

“I will walk down the aisle on my husband’s arm at my granddaughter’s wedding.” —Marcia Mohl Wife of Transplant Recipient My husband and I recently celebrated the 10th anniversary of his life-saving liver transplant with a party at NJ Sharing Network. I shared with the more than 50 guests what Gerry’s transplant means to me. Yes, there are the big milestones. But it’s also a lot of little things we take for granted, like opening a jar for me or zipping up my dress when we go out. We express our gratitude for his second chance at life by volunteering for NJ Sharing Network. Gerry has spoken to high school students and handed out information at the MVC and community events. Meanwhile, I serve on a Task Force for NJ Sharing Network to help the caregivers of transplant patients. Caregiving is such an enormous responsibility and I’m excited to use my experience to help others. Fall/ Winter 2017

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COVER STORY

“I get to see my children and grandchildren grow.” —JD de León Kidney Recipient from Living Donor The youngest of my 10 children was only 8-yearsold when I received a lifesaving transplant. I was in my early fifties and my wife was preparing to be a living donor. However, high blood pressure ruled her out as a candidate. When she explained our predicament to her colleague, Ken Wenger, pictured to my left, he was determined to be a suitable donor. Ken’s kindness has meant the world to my family—which now includes six grandchildren—and we are eternally grateful. Before the transplant, my ability to work and enjoy life had been diminished. Today, at 62, I’m running my own company, serving on NJ Sharing Network’s Foundation Board and, of course, enjoying every minute with my loved ones.

Q&A

As a founding member of the Division of Liver Transplantation and Hepatobiliary Surgery at New Jersey Medical School, Dr. Dorian J. Wilson was an integral part of the team that performed the first liver transplant in the state. In addition to his practice, Dr. Wilson is a Professor of Surgery at Rutgers, New Jersey Medical School. He has served as our Medical Director and on our Medical Advisory Board and is a regular attendee of our events. What changes have you seen in organ and tissue donation? I have seen innovations that have allowed for more efficient and effective organ donor recovery processes as well as an elevated awareness leading to enhanced capture of organs and tissue. Most impressively, I have watched the medical community stretch the envelope to ensure the utilization of every precious resource available, i.e., finding ways to recover organs that historically may not have been deemed suitable for transplantation. How have NJ Sharing Network and its hospital partners worked together to save lives? NJ Sharing Network has worked tirelessly on perfecting the “process” through education, advocacy and partnering, whereby their hospital partners are willing to become progressively more committed.

“I was able to have my daughter…and she is going to be a big sister!” —Kerry O’Connor Pancreas Recipient I was in my late twenties when complications from Type 1 diabetes caused me to have seizures and low blood sugars. I could no longer work or drive and was waking up every two hours to check my sugar levels. I was on the waiting list for 11 months before receiving a pancreas transplant at the University of Minnesota Medical Center, one of the few facilities in the country which perform pancreas-only surgeries. The selfless act of donation restored my health—I am no longer dependent on insulin—and this ultimately enabled me to start a family.

How would you complete the sentence, “Because of Donation…”? Send your story to editor@njsharingnetwork.org. Fall/ Winter 2017

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Share a story close to your heart. I once did an organ recovery involving a young man whose mother was a nurse at the hospital. The mom sent a note and a picture of her son to the operating room, imploring the team to take good care of him. After the recovery, I wrote mom to let her know how her support and energy had helped the team, and to assure her we had taken her message to heart. We continued to communicate for nearly two years. I would like to believe our alliance allowed her an additional measure of healing during what must have been a tremendously difficult period in her life! Anything else you would like to share? I have been privileged to be the recipient of many blessings as a result of my participation in organ and tissue transplantation. The resilience and fortitude of the families and healthcare providers has helped me to exhibit such qualities in my own life.

COVER STORY

“A potential life-saving transplant means my brother would be able to live a normal life.” —Dipak Patel Brother of Kidney Patient My family wishes for nothing more than a kidney transplant for my brother, Milan, pictured to my left. He is only 29-years-old and relies on four-hour sessions of hemodialysis three times a week to stay alive. We’ve been told because his blood type is O+, the wait time for a kidney could be 5-7 years. It will all be worth the wait if he can one day fulfill his wishes of finishing college and taking care of our parents.

“I married my best friend.” —Ron Oswick Husband of Transplant Recipient If not for a life-saving heart transplant, which took place more than 20 years ago, I would not have met Tanya, my wife and best friend. We only knew each other a couple months, when Tanya told me she had a heart transplant. I listened in disbelief as she explained how she had suffered a stroke at the age of 11, brought on by a condition know as restrictive cardiomyopathy. Before she would be allowed to leave the hospital, she required a life-saving transplant. Thankfully her wait was only three months. Ever since we started dating, we’ve been fixtures at the 5K Celebration of Life with Team Second Chance. It was an incredible feeling to walk down the aisle with her last September.

“I have been able to live a life of health, happiness and fulfillment.” —Missy Rodriguez Liver Transplant Recipient In 1985, I became the first-ever 10-year-old liver transplant patient. With my second chance at life, I earned a master’s degree from Columbia University, worked as a guidance counselor and girls tennis coach, and became mom to three boys. For nearly 30 years, I kept my medical history private. But a new round of health issues made me realize I needed to go public with my story. To celebrate the 30th anniversary of my transplant, I established Missy’s Miracle Scholarship Fund, which provides scholarships to students whose lives have been impacted by donation and supports programs to educate the community on organ and tissue donation. If my story saves one life, I have achieved my goal. Fall/ Winter 2017

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COVER STORY

“I can run, jump, and play with my adventurous 2-year-old son.” —Michelle Brugger Tissue Recipient When I was 23 years old, I tore my ACL during a workout. Doctors told me without surgery, I would never be able to do martial arts again. (I’m a 3rd Degree Black Belt.) Forget about running. It wasn’t until seven years later, when I started a 5K Celebration of Life team, did I make the connection that I myself am a tissue recipient. Because of the generosity of tissue donors, people like me are able to regain their quality of life.

"I continue to be tremendously inspired by the compassion of the donors and their families who made a decision to give life to others. It is an honor and a privilege to be a part of the process." Dr. Margarita T. Camacho Surgical Director, Cardiac Transplantation Newark Beth Israel Medical Center Dr. Camacho is truly at the heart of our Advanced Heart Failure Treatment and Transplant Program at Newark Beth Israel Medical Center, an RWJBarnabas Health facility. Her dedication and commitment has positioned her as a nationally recognized leader in cardiothoracic surgery and enabled Newark Beth Israel to have now performed more than 1,000 heart transplants, a milestone only eleven other centers in the United States have reached.

100 Years of

Service… and Counting NJ Sharing Network has grown over its 30 year history from a group of a few dozen employees to an organization of almost 200 professionals. These four employees with more than 25 years of service, have dedicated their careers to our life-saving mission. Donna King, Senior Laboratory Supervisor, joined shortly after the organization formed in 1987. Donna oversees the work of the transplant laboratory, primarily handling compatibility testing that matches donors and recipients. “Even after all this time,” she says, “my job feels rewarding each and every day knowing I make a difference in someone’s life.” Tess Lewis, part of Donna’s team, was hired right out of college in 1991 to work with a handful of technologists in the lab. Today she is a technical specialist overseeing cross

matching in the stateof-the-art laboratory— which is open 24/7, 365 days a year and includes more than 30 members. Occasionally, Tess has the opportunity to meet a recipient or donor family from a case she worked on. “It’s extremely gratifying to know you played a role in their remarkable story,” she DEDICATION From left, Oscar Colon, Donna King, Mara Barlow and Tess Lewis all started at NJ Sharing Network more than 25 years ago. says. Oscar Colon also started at NJ Sharing Network more than 25 years ago. As an Inwork tirelessly and with endless enthusiasm House Clinical Donation Specialist, Oscar is a as Assistant Director, Marketing and vital link between the organization and a group Communications. Mara has made significant of partner hospitals. contributions to the organ and tissue donation Like many others on the team, he says he community on a state and national level. doesn’t consider working at NJ Sharing Network “Organ donation is so close to my heart! a job. “I consider this a mission in life,” he says. The wonderful and dedicated volunteers, NJ Mara Barlow started with NJ Sharing Sharing Network employees and partners I Network in the newly created role of public have met along the way have become family,” relations manager in 1992. She continues to Mara says. Fall/ Winter 2017

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INNOVATIONS

Looking Back, Moving Forward NJ Sharing Network has played a critical role in increasing the number of lives saved and enhanced through organ and tissue donation and transplantation since the organization was founded 30 years ago. The timeline on these pages highlights major milestones (white boxes represent national and global milestones) and provides a look at what the future holds in store.

Pre-1960 First tissue donation, a skin transplant, took place in 1869. In 1906, the first cornea transplant was performed. Decades later, the first organ transplant would take place in 1954, when a living donor gave a kidney to his identical twin.

1980s

1990s

In 1983, Congress declared the first National Organ and Tissue Donor Awareness Week in April, which later expanded to National Donate Life Month. In 1986, the first heart transplant operation was performed at Newark Beth Israel and the first pancreas transplant operation took place at Saint Barnabas.

Laparoscopic surgery was first used to remove a kidney from living kidney donor in 1995. Federal legislation passed in 1998 required hospitals participating in Medicare and Medicaid programs to refer all deaths and imminent deaths to local OPOs, and the first person consent law was passed.

1997 National Minority Donor Awareness Week is established to underscore the critical need for people from diverse communities to register as organ and tissue donors.

1960s + 70s The 1960s started with the first successful kidney transplant performed between siblings, who were not twins, and saw the first successful pancreas, liver and heart transplants. In the 1970s, cyclosporine, the first effective immunosuppressant drug, was introduced and the computerbased organ matching system (United Network for Organ Sharing) was established.

1987

NJ Sharing Network established. First headquarters were at 150 Morris Avenue in Springfield.

1992

NJ Division of Motor Vehicles mandates information about organ donation be included in the driverâ&#x20AC;&#x2122;s manual and on the back of driverâ&#x20AC;&#x2122;s license.

1998

NJ Sharing Network establishes a statewide organ and tissue Donor Registry and works with legislators to revise the Uniform Anatomical Gift Act.

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2010–Present

2005–2009

2000–2004 In 2002, real time data on the number of U.S. patients waiting for a transplant becomes available online.

In 2008, the NJ Hero Act was signed into law, mandating the availability of an online donor registry, curriculum inclusion of organ and tissue donation education for grades 9-12 at all public schools, a requirement for all public institutions of higher learning to provide information to students regarding organ and tissue donation, and required instruction regarding donation in colleges of medicine and professional nursing schools.

Since the start of this decade, NJ Sharing Network has done much to raise public awareness about donation, including starting the 5K Celebration of Life in 2011, which has touched tens of thousands of lives and generated more than $6 million to date. The Landscape of Life Tribute Wall and Meditation Garden were created to recognize those in whose honor or memory contributions were made to our Foundation.

2013

Organ and tissue donation exhibit created at Liberty Science Center.

2001

NJ Sharing Network created New Jersey’s “Donate Life” specialty license plate.

2014

Riley’s Dance established as first family fund of our Foundation.

2015

2003

Legislation allowed for the indication of the “organ donor” preference directly on the NJ digital driver’s license.

2005

NJ Sharing Network established a Foundation.

NJ Sharing Network pilots Donate Life National Registry, which is later adopted nationwide.

2016

2009

NJ Sharing Network moved to state-of-the-art facility in New Providence.

NJ Sharing Network helped save 613 lives through donation— more lives saved than ever before!

2017

What’s Next?

NJ Sharing Network plans to launch a new Personalized Transplant Medicine Institute (PTMI), which will be dedicated to the research and development of innovations aimed at increasing the number of successful organ and bone marrow transplants performed each year. The PTMI’s multifaceted approach will include personalized genomics, assay development, living kidney donation and regenerative medicine, all of which will transform transplantology as it is known today. Fall/ Winter 2017

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The Wall of Contributors is unveiled at NJ Sharing Network to recognize those who have supported our Foundation in the previous year.

RAISING FUNDS & AWARENESS

Help Strengthen Our Foundation By making a contribution to our Foundation, you empower our efforts, bringing us a step closer to providing the greatest gift of all…the Gift of Life. Here are just some of the many ways to contribute.

Featured Contributor

Photocredit: Kathy Cacicedo, Courtesy of Overlook Foundation

Lenore Ford has given her time, talent and treasure to a variety of

GIVING BACK Foundation Board Member Lenore Ford is committed to supporting our Foundation to honor the memory of her husband.

causes throughout her life. So it’s only natural for her to remember the organizations closest to her heart in her estate planning. With the help of a financial advisor, Lenore has designated four beneficiaries— including the NJ Sharing Network Foundation—to a life insurance policy. “Estate planning is a wonderful way to help the organizations that mean a great deal to you,” says Lenore, of Morristown, a member of the Foundation Board. Giving back took on new meaning in 1994 when her husband, Bill, developed a rare liver disorder. Despite two liver transplants, he passed away after the wait for organs compromised his immune system. Soon after, Lenore, a volunteer at Overlook Hospital in Summit, was asked to start an organ donor awareness program. NJ Sharing Network provided the materials needed for her and a group of dedicated volunteers to spread the word about the need for organ and tissue donation. They marched in parades, tied ribbons around trees and succeeded in having the Empire State Building lit up in the colors of donation. “I found comfort in doing this work in Bill’s memory,” she says. “There are many lives saved every day through the generosity of organ donors. It’s miraculous,” she says. “I would ask everyone to remember NJ Sharing Network in their planned giving—where else can you have a direct impact on saving lives!”

COMMON TYPES OF PLANNED GIFTS

What Is Planned Giving? Planned gifts are designed to help you meet your financial and charitable goals while supporting NJ Sharing Network in the long term. Our Foundation is a tax-exempt 501(c)(3) nonprofit organization, so your charitable contribution is tax deductible, to the fullest extent allowable by law.

BEQUESTS A gift in your will is a great way to make a meaningful contribution to our Foundation, while also providing estate tax savings for your heirs. GIFTS OF STOCKS, BONDS, OR MUTUAL FUNDS Gifts of appreciated stock can provide substantial support to our Foundation and have a long-term impact on our lifesaving mission. You may benefit from a gift of appreciated assets by deducting the full fair market value of long-term appreciated assets and avoiding tax on the capital gain.

Did you know you can make your planned gift in memory or in honor of a loved one? Through a memorial or honorary planned gift, you accomplish two things: You establish a legacy that invests in our life-saving work and you create a lasting tribute for yourself and your loved one. As the contributor, your name will be recognized on our Wall of Contributors while your loved one will be recognized on our Landscape of Life Wall.

LIFE INCOME GIFTS Charitable gift annuities, charitable remainder trusts, pooled income funds, charitable lead trusts and gifts of remainder interest in homes and other real estate can allow you to make the gift of a lifetime, while maintaining or enhancing your personal financial position.

If you would like more information about supporting our Foundation with a planned gift, please contact Alyssa D’Addio, Assistant Director, Philanthropy and Foundation Programs, at 908-516-5432 or adaddio@njsharingnetwork.org.

OTHER BENEFICIARY DESIGNATIONS Gifts through revocable living trusts, retirement and savings accounts, life insurance policies, and similar plans can be structured to benefit you, your family, and our Foundation.

We always recommend that you speak with your tax advisor as we cannot provide tax or legal advice. Fall/ Winter 2017

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RAISING FUNDS & AWARENESS

PROGRAMS FUNDED BY

YOUR GENEROSITY Innovative Research • Advanced technical training for our clinical staff • Educational programs for hospital staff • Clinical studies in our state-of-the-art laboratory

Public Awareness and Education • Donate Life float at the Tournament of Roses Parade honors donors and their families, recipients and living donors

What Is the Annual Fund? The annual fund is a vital part of our fundraising efforts. Your generosity directly supports the core mission of our Foundation—increasing the number of lives saved through innovative transplant research, family support, public awareness and education. As you plan your holiday-season and year-end giving, consider making a contribution to our Foundation’s annual fund. 100% of your contribution is tax-deductible.

• Educational programs and materials for high school and college students

Family Support • 5K Celebration of Life • Landscape of Life Wall and Meditation Garden acknowledges contributions made in honor or memory of organ and tissue donors, transplant recipients and members of the community • Organ and tissue donor memorials at hospitals and our headquarters • Crisis funds for new transplant recipients and those patients waiting • Scholarships awarded to high school seniors entering college whose lives have been impacted by organ and tissue donation and/or are advocates • Wrapped in Love shawls for our families, handmade by volunteers, as a tangible expression of comfort and compassion

• Team Liberty participation at Transplant Games of America • Exhibit at Liberty Science Center

Maximize Your Giving through Matching Gifts Many companies set aside special funds each year to match contributions their employees make to qualified non-profit organizations, such as our Foundation. Most often, companies match contributions dollar for dollar, but matches can vary. The NJ Sharing Network Foundation’s EIN is 20-2737719. (Most companies will ask for this number on their matching gift forms.) To find out if your company will match your contribution to NJ Sharing Network, visit www.NJSharingNetwork.org/Contribute.

More Ways to Contribute AMAZON SMILE

ONLINE STORE

Give back while shopping online. Login to Amazon Smile and 0.5% of your purchase will support our Foundation and its programs.

Shop at NJ Sharing Network’s online store, and rock your blue and green in support of organ and tissue donation (20% of proceeds go to our Foundation). Purchase apparel, totes, drinkware and more for family and friends, or treat yourself!

To get started, visit www.Smile.Amazon. com and add “New Jersey Organ and Tissue Sharing Inc.” as your charitable organization. Fall/ Winter 2017

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Visit www.LikeWear.com/NJSharing Network to see all items.

SOCIAL MEDIA

Seeing Stars

@NJSharingNetwork

@NJSharing

@NJSharingNetwork

@NJSharing

It means the world to us when you take a minute to review NJ Sharing Network on Facebook. A sentence or two goes a long way to helping spread the word about our life-saving mission. Here are just some of the awesome 5-Star messages we have received:

Whatâ&#x20AC;&#x2122;s More Jersey Than Pizza?

VAN-ITY SHOTS Our NJ Sharing Network van is a great backdrop for photo-opsâ&#x20AC;Śand it has its own Twitter account. Next time you spot the van at one of our community events, NJ SHARING NETWORK VAN spotted take a photo and outside the Parker House in Spring Lake this tag @NJSNvan. summer where we hosted a thank you event for 5K team captains and sponsors.

SPECIAL DELIVERY The creative team at McCann Echo used pizza boxes to spread awareness about donation.

Social Media Milestone

Ever wonder how many people in your community are on the transplant wait list? Visit SaveNJLives.com and enter your town to create a custom graphic such as the one at right. NJ Sharing Network piloted this project with McCann Echo, an award-winning healthcare advertising agency based in Mountain Lakes. The pro bono campaign will be fully launched in April 2018 for Donate Life Month. Check it out and remember to hashtag #SaveNJLives when posting to your social media pages. Thank you McCann Echo! Fall/ Winter 2017

20,000+

Did you help spread the life-saving message of donation on a recent trip? Tag your pics #NJSharingNetwork or #DonateLifeNJ so we can find them on social media.

Likes on Facebook

# 14

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WHEN IN ROME Rich Hayes, volunteer and liver transplant recipient, spreads our lifesaving message abroad.

SOCIAL MEDIA

That’s Incredible! Many of us in the donation community have experiences which feel like more than “just a coincidence”—moments which are described as divine intervention, miracles or signs of hope.

Wherever He Goes

Full Circle Linda Price, a longtime critical care nurse and a per diem recovery specialist for NJ Sharing Network’s Clinical Department, shares this incredible story: “About eight years ago, we recovered tissue at a hospital in Camden. The details of the donor’s death were very unique. The next day I took care of a patient who had just received a kidney transplant. As I was reading his history, I noticed the donor of his kidney had died under the same unique circumstances as the tissue donor the day before. It had to be the same person. Ethically and legally I couldn’t share this with my patient, but it was such a wonderful experience to see the gift of donation come full circle.”

Wrong Number Transplant recipient Mike Strusiak calls his organ donor, Kristen Theresa O’Hara, his “angel.” So when he was hospitalized at Saint Barnabas Medical Center in Livingston earlier this year, he was comforted to discover she was looking over him. Just steps from his hospital room, one of NJ Sharing Network’s “Quilts of Love”—featuring squares honoring Kristen and others who gave the gift of life—was on temporary display. Even more remarkable, when he returned to Saint Barnabas two months later for a different procedure, he was shocked the quilt was still there. “I guess she knew I was going to be back, so she stayed,” he says. The biggest “coincidence” came in June at the 5K Celebration of Life in New Providence. Mike was volunteering that morning when he was asked to help a mother who requested to see her daughter’s quilt. He held the quilt up for a photograph and while folding it began to share the story of how Kristen’s quilt was at Saint Barnabas…but, wait, it wasn’t…there she was on the bottom row! “They could have asked anyone to help, but they asked me,” he says. “That quilt follows me wherever I go.”

A wrong number never felt so right. In the days before the New Providence 5K Celebration of Life, Teresa Akersten, a member of Team Biff ’s Gifts, texted a link to her fundraising page to about a dozen contacts. “Do I know you?” someone replied. Teresa apologized for having the wrong contact info. Here’s a screenshot of the amazing response.

After the Storm Gary Siriday saved three lives as an organ donor. The day he passed away in 2016 started out dark and overcast, as seen in the photograph, below, of the transplant helicopter arriving at

Have you experienced a Sign of Hope? Jersey Shore University Medical Center. The photo above taken only hours later, shows the helicopter flying in clear blue skies on its way to one of Gary’s recipients. His family took the transformation in the weather as a sign that choosing donation had been the right decision. Fall/ Winter 2017

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Share your story with info@njsharingnetwork.org or tag #NJSharingNetwork on your social media pages.

SAVE THE DATE

2017

JOIN US…in our mission to save lives.

NOVEMBER th 9

10 – th 12 th

30TH ANNIVERSARY GALA Reserve your space today and submit your Tribute Journal ads by Oct. 25. Visit www.NJSharingNetwork.org/gala or contact Alyssa D’Addio, Assistant Director, Philanthropy and Foundation Programs, at 908-516-5432 or adaddio@njsharingnetwork.org.

Marla Bace, Chair Randi Geffner, Vice Chair Philip S. Kolm, Vice Chair Daniel Sarnowski, Treasurer Peter Rooney, Jr., Past Chair Cheryl H. Cohen, MBA, FHFMA JD de León Victor DiSanto Lenore C. Ford Ezequiel Garcia Laura Coti Garrett, MS, RDN Lisa J. Meyers Suzann Rizzo Elizabeth Stamler Bhavna Tailor

Ex-Officio Members Joseph S. Roth President and CEO Elisse E. Glennon Vice President and CAO Executive Director, Foundation

Most religions view donation as an act of compassion and generosity. During National Donor Sabbath, we encourage you to partner with your faith community to help spread awareness about donation. Talk to your faith leader about sharing your personal story, or invite a transplant recipient or donor family to make a presentation at your house of worship. For more information, visit www.NJSharingNetwork.org/ donorsabbath or contact E. Denise Peoples, Community Educator, at 973-668-4687 or dpeoples@njsharingnetwork.org.

Foundation Board

Hon. F. Michael Giles, Secretary

NATIONAL DONOR SABBATH

30th Anniversary Gala

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Fall/ Winter 2017

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2018 Transplant Games of America Join Team Liberty and go for the gold!

2018

JANUARY st 1 ROSE PARADE

Watch the 2018 Donate Life Rose Parade Float travel down Colorado Boulevard during the 129th Rose Parade in Pasadena, California. NJ Sharing Network and our generous partners, Bridge to Life and Dignity Memorial Funeral Homes, will once again sponsor three donor families and a transplant recipient to attend the multi-day festivities.

2018 ROSE PARADE—NJ HONOREES FLOAT RIDER

From the grandstands, family members will view the float adorned with floragraphs honoring their loved ones. The transplant recipient will ride the float representing all New Jersey residents who have received a second chance at life through donation.

Kidney and Pancreas Recipient Michael Strusiak (see page 15 for story) Sponsor: NJ Sharing Network

FLORAGRAPH HONOREES—ORGAN AND TISSUE DONORS Reinaldo Garcia Sponsor: Bridge to Life

The parade will air on NBC at 11:00 am EST and will be streamed online and via social media.

Luke Bautista Sponsor: Dignity Memorial Funeral Homes

Jared Colon Sponsor: NJ Sharing Network Employee Giving Campaign

A Memorable Day More than 400 attendees gathered at Newark Liberty International Airport Marriott in Newark in September for our Symposium on Organ & Tissue Donation. Highlights of the day dedicated to education and networking... • Audience questions answered during the panel, “The Truth About Organ and Tissue Donation,” moderated by Steve Adubato, anchor, WNET (PBS) & NJTV • Previews of living kidney donor and heart transplant surgeries from our “Live From” program at Liberty Science Center, and information on becoming a living kidney donor • Crystal Heart Award presented to Bill Ritter, anchor, Eyewitness News, WABC-TV

• “Making Brave Decisions to Increase Organ, Eye and Tissue Donation,” with David Fleming, President and CEO, Donate Life America and Chris Mumford, EVP, Managing Director, Martin Agency, sharing provocative advertising tactics to engage millennial males

Check out more symposium photos at www.Facebook.com/ NJSharingNetwork.

• Plus, MVC mobile unit on site offering agency services to attendees, an evening reception with the Gateway Regional Chamber of Commerce and sessions on volunteerism, family support, religion and donation and more! Fall/ Winter 2017

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NONPROFIT ORG U.S. Postage

PAID Union, NJ

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

Permit No. 931

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

Why I Support NJ Sharing Network

AIR TIME Heart transplant recipient Tom Eliezer and his wife, Solly, center, residents of Pompton Lakes, shared their story on the podcast, The Off-Air Show with Z100’s Skeery Jones, left, and Greg T. Greg T is known as the prankster who will do anything for a laugh on Z100’s syndicated radio program, Elvis Duran and the Morning Show. The outrageous radio personality, however, is quite serious about his commitment to NJ Sharing Network. The New Jersey native, also known as “The Frat Boy,” helps spread awareness about our life-saving mission on and off the air. He has also helped kick off our 5K Celebration of Life for the past several years, including the Paramus, Long Branch and New Providence locations in 2017.

Like us on facebook @NJSharingNetwork

FRAT BOY Greg T works the crowd at the 5K Celebration of Life.

Greg T enthusiastically welcomes participants and warms up the crowd before heading out to run or walk the course himself. Along the way, he encourages others to register as organ and tissue donors and takes time to listen one-on-one to donor families and transplant patients and recipients. “NJ Sharing Network is a fantastic organization that I’m so proud to be a part of,” he said. “Wherever NJ Sharing Network is going, that’s where I’m going.” Thanks Greg T for your dedication to our life-saving mission!