Circle of Life Magazine: Fall 2012 by NJ Sharing Network

FALL 2012 VOLUME 3

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ISSUE 2

A PUBLICATION OF NJ SHARING NETWORK

The Power to Save a Life Skilled surgeons explain how every successful transplant is part miracle

CELEBRATING 25 YEARS OF SAVING LIVES!

WHO WE ARE NJ Sharing Network is a non-profit, federally-designated, organ procurement organization responsible for the recovery of organs and tissue for the nearly 5,000 New Jersey residents currently awaiting transplantation, and is part of the national recovery system, which is in place for the more than 115,000 people on waiting lists.

BOARD OF TRUSTEES John J. Halperin, MD Chair

Bruce I. Goldstein, Esq. Vice Chair

Vito A. Pulito Treasurer

Marc H. Lory Secretary

Patrick M. Buddle, MD Margaret Dreker Edward J. Florio, Esq. Aline M. Holmes, RN Anthony L. Marchetta Howard A. Nelson Richard G. Popiel, MD Timothy J. Touhey

EDITORIAL TEAM Mara Barlow Assistant Director, Marketing and Communications NJ Sharing Network

Nell Ryan Creative Services Coordinator NJ Sharing Network

Lernard Freeman

WHAT A SPECIAL AND REWARDING YEAR 2012 IS PROVING TO BE While we spent a great deal of time in 2012 celebrating the 25th Anniversary of NJ Sharing Network, we never took our focus off what we celebrate every day: the lives saved through the selfless act of organ and tissue donation. In this issue of Circle of Life, you can learn more about the great work that has been accomplished over the past year as well as how the process of organ and tissue donation connects people for life. This issue’s cover story reveals what it’s like to be a transplant surgeon, both a demanding and emotional job, but one that is extremely rewarding (see page 8). Other articles discuss how lives can be intertwined forever after letter exchanges occur between a donor family and an organ recipient (see page 13), and how a dynamic duo are paving the way to increase the current low organ and tissue donor registration rates in Hudson County (see page 3). Awards were given and won this year. We gave our 25th Anniversary Circle of Life Award to our 54 hospital partners to acknowledge and celebrate years of partnership (see page 6), a teenage girl, who is headed off to college to become a transplant surgeon, was awarded the Benjamin R. Chirls Scholarship to help her dream come true (see page 19), and our team of transplant recipient athletes won gold, silver and bronze at the Transplant Games (see page 22). As this year comes to a close, we’d like to give thanks to everyone who worked hard to help us achieve our goals. We’d also like to thank the hundreds of organ and tissue donors who selflessly provided the gift of life to save and enhance the lives of others, as well as the thousands of others who are currently registered to be organ and tissue donors. Despite all our great accomplishments this year, there still are approximately 5,000 people on the transplant waiting list in New Jersey. Work still needs to be done to increase the number of registered organ and tissue donors so that waiting lists can become a thing of the past. In this time of giving, please think about ways you can help our efforts. If you encourage just one new person to register to become an organ or tissue donor, you are making a huge difference.

Public Relations Manager NJ Sharing Network

Carrie Keating, RN, CCRN, CPTC Transplant Coordinator, Level 3 NJ Sharing Network

Romelle Holmgren Lysenko, MSW, LCSW Donor Family Aftercare Coordinator NJ Sharing Network

CONTRIBUTORS: Erika Desimone Designer/Creative Director Erika Desimone Design

Jennifer Brennan Writer JCJ-Communications

Cover photo and editorial photography for feature story by Nell Ryan.

AUGUST 2010

Joseph S. Roth President and Chief Executive Officer NJ Sharing Network

ABOVE AND BEYOND

ADVISORY BOARD Michael Shapiro, MD Chair Transplant Surgeon Representative

Dynamic Duo Spreads Word About Organ Donation in Hudson County Maryann Rosenberg and Barbara Kuzminski, both from Bayonne, are on a life-saving mission and they won’t be stopped. Touched in different ways by the miracle of organ donation and transplantation, this dynamic duo has taken up the charge to move the mark on Hudson County’s numbers for registered organ and tissue donors. Following the tragic loss of her 20-month old grandson, Jonathon Paul Kuzminski, in May 2011 and meeting Wyatt J. Fleming, the two year old recipient of Jonathon’s liver, Barbara Kuzminski realized she had to do something to help educate people about the importance of organ and tissue donation. “Once I saw this little boy and his smile, and knowing he is now three years old and in full remission because of my grandson’s liver, I know this is something I have to do,” said Barbara. “To see life come out of a tragedy is truly amazing.” Maryann Rosenberg has experienced the other side of the organ donation story numerous times. Several members of her husband’s family -- including her husband, his brother and her husband’s aunt -- each became liver recipients over the course of one year in 2004. Each was diagnosed with a different life-threatening liver disease, requiring them to be put on the transplant waiting list. In 2009, Maryann became a volunteer for NJ Sharing Network in large part because, “My husband had a second chance at life. If he hadn’t received his liver transplant when he did, he would not be here spending the time with me and our four children like he has been able.” As co-leaders of Donate Life Bayonne/Jersey City, Maryann and Barbara are making significant strides in educating people about the importance of organ and tissue donation. These women have been instrumental in securing educational table displays at local stores, libraries, festivals, health fairs, college campuses and motor vehicle agencies. The City of Bayonne and St.

Loretta Aigner, RN Transplant Center Administrator Representative

Gail Clegg Organ and Tissue Donor Family Member Representative

Roseann DiBrienza, RN, MS Public Representative

Katherine Kennedy Voluntary Health Organization Representative

Stuart R. Geﬀner, MD Transplant Surgeon Representative

Michael Gould, MD Emergency Room Personnel Representative

Sara E. Jensen, Esq. Public Representative

David A. Laskow, MD Transplant Surgeon Representative Bayonne Mayor Mark Smith presents Donate Life Bayonne with a proclamation for National Donate Life Month to Barbara Kuzminski (center) and Maryann Rosenberg (right). Joining the “Dynamic Duo” are NJ Sharing Network's Alyssa D'Addio and NJ Sharing Network Foundation Board Member JD de Leon.

Debra L. Morgan Transplant Center Administrator Representative

Shamkant Mulgaonkar, MD Transplant Center Administrator Representative

Trish O’Keefe, RN Hospital Administrator Representative

Peter’s College in Jersey City have become members of NJ Sharing Network’s Workplace for Life initiative. Future programs have been arranged that will educate students of St. Peter’s College about organ donation as a means to encourage registration. And what Maryann and Barbara are doing is working: the number of people who have walked into the Bayonne motor vehicle agency to register as an organ donor has increased by 15 percent this year. “What these two women have been able to do is simply amazing,” said Alyssa D’Addio, education and partnerships coordinator at NJ Sharing Network. “For years Hudson County has been one of the lowest counties in the state when it comes to the number of registered organ and tissue donors. If it’s up to the dynamic duo of Maryann and Barbara, these numbers will continue to rise.” Showing no signs of letting up these two incredible women are in it for the long haul. “This is something I have to do for the rest of my life,” says Barbara. “There is no backing down. Now, I have to go full-steam ahead and get the number of registered organ donors raised.”

Ty J. Olson, MD Neurosurgeon Representative

John S. Radomski, MD Transplant Surgeon Representative

Prakash Rao, PhD, MBA, FACHE, HCLD Human Histocompatibility Specialist Representative

Bruce Stroever Tissue Bank Representative

Harry Sun, MD Transplant Surgeon Representative

Dorian J. Wilson, MD Transplant Surgeon Representative

Mark J. Zucker, MD Transplant Center Administrator Representative

CONTACT INFORMATION BY MAIL: NJ Sharing Network 691 Central Avenue New Providence, NJ 07974 PHONE: 1-800-742-7365/908-516-5400 FAX: 908-516-5501

www.NJSharingNetwork.org NJ Sharing Network is a member of Community Health Charities of NJ

www.NJSharingNetwork.org

SHARING NEWS NJ Sharing Network Leadership Invited To Speak At National Conferences

NJ Sharing Network President and CEO Joe Roth and the executive director of the Foundation, Elisse Glennon, along with their colleagues from the Gift of Life Donor Program, were invited to speak about the power of philanthropy in the organ and tissue donation community at the annual Musculoskeletal Transplant Foundation (MTF) Leadership Con-

ference this year. MTF also presented NJ Sharing Network with an award (pictured left) signifying 25 years of working together to enhance the lives of others through tissue transplant. Joe Roth also traveled to Chicago to share winning strategies for building a successful leadership team with members of the organ donation and transplant community at the annual meeting of the Association of Organ Procurement Organizations this past June. Emphasizing the importance of an organization’s core values and how leadership must be the first to adopt them, Joe was able to highlight NJ Sharing Network leadership staff successes using this approach.

Enlightening College Freshmen Eastwick College in Ramsey, NJ has established a unique, highly successful program that aids in educating students about the importance of organ and tissue donation. One requirement of the college is that every incoming freshman takes a 12-week freshman seminar class. One of the 50-minute sessions is an educational presentation given by NJ Sharing Network followed by a personal testimonial given by a donor family member or an organ recipient. Survey results demonstrate that these sessions are very successful in delivering the organ and tissue donation message to the students. Prior to the session, only 33 percent were registered organ and tissue donors. Afterwards, 58

percent pledged to register as a donor and 19 percent said they would consider becoming one. Furthermore, a total of 94 percent of students pledged to tell other people about the importance of organ and tissue donation.

Media Personality Spreads Organ Donation Awareness

Minorities account for more than half of the individuals on the U.S. transplant waiting list, while only representing onethird of living and deceased donors. To help increase organ donor awareness in multicultural communities, donor families and recipients from various ethnic groups, and NJ Sharing Network, worked with TV personality Ericka Pino to produce bilingual public service announcements to promote the life-saving benefits of organ donation and encourage minorities to become registered organ donors. These announcements are appearing on Comcast Cable this fall.

Volunteer Receives National Donor Memorial Award Cherry Hill resident, Tom Gano, was honored in June with the 2012 National Donor Memorial Award of Excellence for his outstanding volunteer work in promoting the importance of organ and tissue donation. Since his 16-year old son, Curtis, became an organ donor in 1987, Tom has been a tireless champion for the cause. More than 106,000 students have learned about the importance of becoming an organ and tissue donor through Tom’s presentations at local high schools. Tom also has been a volunteer for the Gift of Life Donor Program in Philadelphia for more than 23 years, and a member of Hearts of Gold, an organization for donor families, where he founded a peer counseling group for newly bereaved families. Established in 2010, the National Donor Memorial Award of Excellence recognizes exceptional advocates for organ and tissue donation, especially “unsung heroes” who have not received recognition at a national level.

25 TH ANNIVERSARY EDITION

SHARING NEWS Become “Friends” With Organ Donation Earlier this year Donate Life America, the national organization promoting organ and tissue donation in the United States, partnered with Facebook to encourage Facebook users to register as organ and tissue donors. Using the Facebook timeline feature, people can now add when they became a registered organ donor as well as include information about why they made the decision to do so. While following the steps will display your organ donor status on Facebook, it does not add you to the donor registry. Make sure to sign up to be an organ donor at your local Motor

Vehicle Agency. You can also register online on our website, www.NJSharingNetwork.org.

Help NJ Sharing Network spread the word about the importance of organ & tissue donation! 1) Go to your “Wall” and add a “Life Event” 2) Go to the “Health and Wellness” section 3) Add “Organ Donation” to your information

LET’S GET CLINICAL Statewide Organ Donation Training Provided to NJ Nurses Over the past couple of months, NJ Sharing Network has held four “Donation Advocacy Training Days” for nurses at hospitals in New Jersey including Capital Health Hopewell Campus, Newark Beth Israel Medical Center, Robert Wood Johnson University Medical Center and Overlook Medical Center. The goal of each session was to help the 150 nurses in attendance better understand the vast components of organ and tissue donation

to fulfill the NJ Board of Nursing requirement for Continuing Education on Organ & Tissue Donation. Additionally a new web-based seminar developed by Nurse.com will teach nurses about the authorization process and reasons some people choose not to donate. The seminar also discusses the collaborative relationship between the organ procurement organization and hospital staff throughout the donation process.

Nurse.com, a leading source of local and national news, jobs, nurse continuing education and a thriving nurse community, partnered with NJ Sharing Network and Gift of Life Donor Program to develop this online resource for New Jersey. For more information, or to register for this course, please visit www.nurse.com. Click on the CE tab and enter the course number “CE665” in the search field.

Dr. Sori Joins NJ Sharing Network Alan John Sori, M.D., F.A.C.S., a highly experienced trauma surgeon, has been named Medical Director of Donation Services at NJ Sharing Network. In this newly created position, Dr. Sori provides round-the-clock medical consultation to NJ Sharing Network staff, transplant surgeons and donor hospital physicians with regards to clinical issues concerning the donor referral process. Joining NJ Sharing Network from Saint Joseph’s Regional Medical Center in Paterson

where he was the Director of Surgical Quality, Dr. Sori maintains his teaching appointment at the medical center. Dr. Sori received his medical degree from The University of Medicine and Dentistry of New Jersey and completed his residency and fellowship in trauma/critical care at University Hospital in Newark. Board-certified in general and critical care surgery, Dr. Sori has authored numerous papers and abstracts in leading medical journals in his specialty. www.NJSharingNetwork.org

life

SOCIAL Media Matters…

Once again, news about NJ Sharing Network and organ and tissue donation hit the television airwaves and made newspaper headlines throughout the state. Following are highlights of a few recent placements: News 12 New Jersey: Reported on the recent spike of registered organ donors in New Jersey, which was highlighted in a first-ever “Donor Designation & Minority Transplantation Profile,” unveiled by NJ Sharing Network at a press event at University Hospital in August. NJTV and WNET Channel 13: Viewers of “NJ Today Show,” learned about the critical need for organ and tissue donation from NJ Sharing Network’s Jessica Melore, senior education and partnerships manager and heart transplant recipient. The Star-Ledger: In April, the Star-Ledger Editorial Board wrote an opinion that more pressure is needed to convince NJ residents to donate organs, mentioning the proposed “Golden Rule Act,” which would allow insurers to limit transplant coverage for patients who are not registered donors. Jersey Journal: The work of Donate Life Bayonne/Jersey City was highlighted in an article in June, featuring an interview and photo of volunteer, Barbara Kuzminski. The Daily Record: Featured the moving story of 18-year-old Brian Bernstein, whose donated organs saved two lives after he was killed in a car accident, and how family and friends honored his memory at the 5K Race to Save Lives. Bloomfield Life: Reported on the volunteer work of Carol and Roy Larsen, who raised $6,700 and walked in the 2nd Annual 5K Race to Save Lives in honor of their daughter, Rebecca, who became a donor in April 2010. Her donated tissue enhanced the lives of 23 people.

Hospitals Honored for Years of Support NJ Sharing Network bestowed its 25th Anniversary Circle of Life Award to its hospital partners in 2012 to acknowledge and celebrate 25 years of partnership in saving lives together through organ and tissue donation. Hospitals pictured here: (1) Hackensack UMC, (2) Valley Hospital, (3) Overlook Medical Center, and (4) University of Medicine and Dentistry of New Jersey were four of our 54 partners who were honored with the award this year.

Scouts Tour NJSN Headquarters Boy Scouts from around the state visited NJ Sharing Network to participate in the First Annual LEDR program, a leadership program sponsored by the Boy Scouts and Eagle Foundation, where scouts learned about the importance of organ and tissue donation.

Collaboration with NJASRO NJ Sharing Network has partnered with the New Jersey Association of School Resource Officers (NJASRO) to help educate students about the life-saving benefits of organ and tissue donation. NJASRO is a non-profit organization that strives to share information on the value of teaching elementary, middle and high school students about the principals of good citizenship through its network of school resource officers, probation officers, and school administrators and educators.

Driving the Message

NJ Sharing Network Education and Partnerships Coordinator Whitney Downer (pictured left) addressed law enforcement officials about organ and tissue donation at the NJASRO training at Monmouth County Police Academy.

Statewide Events Show Support During Donate Life Month Various activities and celebrations took place throughout New Jersey in April -- also known as National Donate Life Month -- to show support of organ and tissue donation. Governor Chris Christie signed a Donate Life Proclamation at Newark Beth Israel and the employees of Valley Hospital in Ridgewood and Pine Belt Chevrolet in Lakewood showed enthusiasm for the cause, while NJ Sharing Network rang the opening bell on NASDAQ on April 12.

Organ and tissue donation was a major focus at this yearâ&#x20AC;&#x2122;s Region I American Association of Motor Vehicles Administrators (AAMVA) annual conference held at Foxwoods Resort Casino. Jessica Melore, senior education and partnerships manager, participated in a panel discussion that highlighted the work that NJ Sharing Network accomplishes in partnership with the New Jersey Motor Vehicle Commission to increase organ donor registration rates.

1. The Valley Hospital showing their support of organ and tissue donation; 2. Long-time donor advocate and board member Dr. Patrick Buddle of Jersey Shore University Medical Center sharing his passion for organ and tissue donation with NJ Governor, Chris Christie; 3. Celebrating Blue and Green Day on April 20 during Donate Life Month at Pine Belt Chevrolet; 4. On April 12, NJ Sharing Network in conjunction with NY Organ Donor Network rang the NASDAQ opening bell in honor of National Donate Life Month. Jessica Melore, NJ Sharing Networkâ&#x20AC;&#x2122;s Senior Manager of Education and Partnerships, also a heart recipient, was honored with an opportunity to address the crowd; 5. Governor Chris Christie signs a Donate Life Month Proclamation at Newark Beth Israel Medical Center.

To see more pictures from our events, please visit www.NJSharingNetwork.org.

the power to save a life Surgeons oﬀer a glimpse into the “butterfly eﬀect” of every critical moment leading to a transplant

Dr. Adena Osband and kidney recipient Ebony Bolling share a special lifetime bond

25 TH ANNIVERSARY EDITION

Imagine having the opportunity to save another person’s life and knowing your actions could prevent a family from feeling the pain and loss of a loved one. Now imagine doing it on a recurring basis. Saving a life is something few have the honor and privilege of doing. A transplant surgeon’s career is dedicated to saving lives as they labor sometimes through exhaustion to give hope and life to patients and the family and friends that love them. A day in the life of a transplant surgeon may seem glamorous: rushing to a waiting plane with a cooler in hand or dashing down a hospital hallway. What isn’t commonly shared are the realities of the long hours, missed holidays and sleepless nights. Often on call, transplant surgeons need to be prepared to go into the operating room on a moment’s notice. After the phone rings, they also need to remain acutely aware of the loss of life the phone call signifies. “We had arrived onsite at a hospital for organ recovery from a 19 year old man who had been involved in a motor vehicle accident,” recalls Dorian Wilson, MD, a liver transplant surgeon at the University of Medicine and Dentistry in Newark. “Our case was delayed, so we walked up to the unit. An anesthesiologist approached me and began asking me questions about the procedure. I explained to him that we are very respectful of the person who has died and grateful for the gifts that are being shared. He then revealed to me that he was the father of the donor. I could have been very tired that day and short with my answers, but thankfully I wasn’t. This situation made me realize the impact of what I do and the appropriateness of being mindful of the gift that is being given.” New Jersey is home to a small number of transplant surgeons. They are a highly dedicated and professional group of physicians. Although they may have multiple reasons for choosing organ transplant surgery, the most compelling seems to be the ability to save and transform lives. Stuart Geffner, MD, a kidney and pancreas surgeon at Saint Barnabas Medical Center in Livingston, is moved by the work he does. “Transplant surgery is incredibly rewarding. When I approach a family in the waiting area and share with them that the kidney transplant has been successful and there will be no more dialysis, it is a very powerful thing.” There are 88,000 people waiting on the kidney list in the United States and about 12 people

die each day without receiving the life-saving organ they desperately need. Living donor programs, which allow a relative or a compatible non-family member, such as a spouse or a friend, to donate a kidney can be another way to save lives. Dr. Geffner, an 18-year veteran, has performed many living kidney transplant surgeries. “Living related surgeries are unique. Each one is special for these families. Usually no one is going to volunteer for a major operation with nothing for them to gain physically,” says Dr. Geffner. Five years ago Adena Osband, MD, a kidney and pancreas transplant surgeon, began her career at Robert Wood Johnson University Hospital in New Brunswick. “I love that you can totally change someone’s life by sharing an organ from a person who no longer needs it. You see recipients and sometimes their families’ lives transformed as well,” says Dr. Osband. Often bonding with the recipients, Dr. Osband loves caring for all of her patients, but finds working with younger ones exceptionally fulfilling. “Transplanting the pediatric group is so gratifying. You get to see them grow so much during the time you are caring for them.” Nine year old Ebony Bolling is one of her patients. Ebony received her kidney transplant last year on July 23 after six months on dialysis. Her case manager saw a butterfly fluttering by and felt like it was a sign Ebony’s kidney was coming. A kidney became available later that day. While recovering in the hospital, Ebony was found drawing butterflies and the deal was sealed. She was nicknamed the ‘butterfly girl.’ Dr. Osband visited with her recently in the hospital’s Butterfly Garden. “I realized there are not many options for surgeons to have a long-

term relationship with patients. That was something I wanted as a physician. In transplant, our patients are ours for life.” Margarita Camacho, MD, a transplant surgeon at Newark Beth Israel Medical Center in Newark, notes that, “An organ is the most remarkable gift you can give to someone and it is extremely gratifying being part of that process. To facilitate that gift is an amazing privilege.” Dr. Camacho has been working in transplant for more than 20 years, specializing in heart and lung recovery. “We had a sick patient in his 50’s who had undergone numerous heart operations and became so ill, that even with a small pump to assist his heart, we knew we were going to lose him within 24 hours if a heart did not become available,” said Dr. Camacho. “He did receive his transplant and was able to return home to live his life.” Unfortunately, not all transplant cases end happily. “We perform less than 2,500 heart transplants a year in the United States and have a minimum of 75,000 patients that could be listed. The disparity is tremendous and overwhelming,” adds Dr. Camacho.

Demanding Schedules The demands placed on a transplant surgeon are grueling. They never know which hospital will call to recover a life-saving organ.

“

(When I) share with them that the kidney transplant has been successful and there will be no more dialysis

-Dr. Adena Osband, MD

it is a very powerful thing.

”

-Dr. Stuart Geffner, MD (right)

www.NJSharingNetwork.org

Catching a nap in an operating room lounge might be the only sleep they may have had in the last 24 hours, with a cup of coffee their last meal. Despite the grueling demands, these lifesavers press on. “This work is highly motivating,” notes Dr. Wilson. “You know you are helping other people, but it can be very exhausting and there are times you are really digging deep to push yourself. It is hard but very worthwhile.” Dr. Wilson’s colleagues agree. “The passion I have for what I do inspires me to work through the fatigue,” says Dr. Camacho. “You need to love what you do as the demands are tremendous.”

Challenges and Rewards Although organ transplants save lives, there are still many daily challenges. Some are heartwrenching, others frustrating and a few require public education. “We have a selection meeting every week, where the team members come together to discuss potential candidates. It is extremely painful to tell a patient they are not a candidate,” said Dr. Camacho. She recalls one such case. “We had a beautiful young mother that had non Hodgkin’s lymphoma. She developed postpartum cardiomyopathy. We now have to wait for her to be cancer free for five years before she can be listed. She is currently living with a heart assist pump and has about a year left of the five year wait.” People often have wrong information regarding donation. Educating the public, hospital colleagues and potential recipients are all part of the responsibilities of a transplant surgeon. “The most challenging part of transplant are the misperceptions,” describes Dr. Osband. “What goes into it, what goes on after the transplant, about organ donation in general. The lack of accurate information is disheartening.” Dr. Geffner and his team strive for perfection. “Despite how often we transplant and as often as everything goes right, it is still a risky business. We have to get as close to perfect as we can every time.” There are many bumps along the road that can prove to be an insurmountable challenge. Dr. Wilson understands this incredible undertaking. “The great number of people that have to somehow work together to get one transplant event to happen successfully is remarkable,” explains Dr. Wilson. “It is an amazing occasion when it does.”

25 TH ANNIVERSARY EDITION

Dr. Camacho, a heart and lung transplant surgeon at Newark Beth Israel Medical Center, and Dr. Wilson, who specializes in liver transplants at University Hospital, dedicate their careers to saving lives.

Transplant surgery also has unique rewards. Seeing a patient who is near death fully recover or transplanting a patient that has waited years to get an organ is an unquestionable payoff. Dr. Osband is delighted when a patient who is difficult to match with a donor receives an organ. “I was treating a young lady who was on dialysis for over 20 years, the majority of her life, and was seriously running out of dialysis access sites,” said Dr. Osband. “She finally received a kidney transplant and is doing wonderfully.” Dr. Wilson remembers a 29-year old woman he cared for. “She had overdosed on Tylenol and was in liver failure. She was in a deep coma. I explained to her father she needed a transplant or she would not survive. She was listed and transplanted. Five days later she awakened. It was an amazing transformation. She was near death and then I was able to see her life renewed.”

Appreciation for the Gift A great respect and appreciation for the gift, and the donor’s family, is shared among the transplant community. Although they enter into the picture during the final chapter of the donor’s journey, they often participate in a moment of silence, which is held in the operating room immediately before the recovery of organs in honor of the donor’s gift. Several times during a case, Dr. Camacho takes time to reflect on the donor and the family that said ‘yes’ to save the life of a stranger.

“When I arrive at the donor’s hospital to recover a heart or lungs and I step through the doors of the operating room it really hits me. The moment of acknowledgement that is held to honor the gift is the time I take to think about it. Often when I am done with the recovery and I have left the donor’s hospital I think about it again. After completing the transplant and speaking with the recipient’s family, it hits me a third time.” From the moment the organ is recovered until it is transplanted is a time of significant accountability entrusted to the transplant surgeon. That job is something that Dr. Geffner takes very seriously. “I feel that we have a responsibility to utilize that organ in the best way possible with such a limited supply,” says Dr. Geffner. “We steward that gift to respect those that gave.” Saving a life is both a formidable responsibility and a privilege. New Jersey transplant surgeons do the job with skill, compassion and an understanding of the extraordinary gift that has been entrusted to them. They overcome many challenges to facilitate the life changing transformations that take place during the transplant process. They do their job remembering that the power to save a life takes many hands and the kindness and generosity of a donor to share the gift of life through organ and tissue donation.

Written by Carrie Keating RN, CCRN, CPTC

Common Questions About Organ & Tissue Donation Who can become an organ & tissue donor? Anyone can decide to be a donor. A person’s physical condition, not his or her age, determines the potential for organ and tissue donation and is evaluated on a case-by-case basis at the time of death. Visit your local Motor Vehicle Agency and ask for the donor designation to be added to your driver’s license or ID card and tell your family that you support organ donation. To register online visit www.NJSharingNetwork.org.

Which organs can be donated? Currently, someone may be able to donate his or her heart, kidneys, liver, lungs, pancreas, and small intestine depending on medical condition and circumstances at the time of death. Many patients who are organ donors may also be candidates for tissue donation.

Is there an age limit for donation? There is no age limit for organ donation. NJ Sharing Network has successfully recovered organs from donors as young as a few days to adults in their 90s. A patient's medical history is more important than the age of the donor. If a patient has a normal functioning organ and is in good health, then organ donation is an option.

How are donated organs allocated? They are allocated on the following criteria: match with donor, medical emergency and time on waiting list. A patient’s age, gender, race, ethnicity or wealth do not affect who receives available organs.

Will my own medical care be compromised if the hospital is aware that I have an organ donor designation on my license? The decision to be an organ donor will in no way affect the level of medical care for a sick or injured person. The team of doctors and nurses involved in treating the patient is not involved with the transplant/recovery team, which is called only after death has occurred.

need new photo for this issue.

Recipients Antwan Hunter and Iesha Ramos

How to Register to Become an Organ and Tissue Donor Please visit www.NJSharingNetwork.org and click on “Become a Donor”

1 2

This brings you to the secure NJ MVC Donate Life NJ registration page. IMPORTANT AT THIS POINT—Do NOT provide any information.

Click on the USER ID NUMBER REQUEST link to begin registration. Go to “User Authentication” and enter your credentials: zip code, driver’s license number, and social security number and click “continue.” Click on box to register online and click submit. Click on the circle to donate organ and click “continue.” Review this page and click on submit. Print the organ donor confirmation page for your records.

www.NJSharingNetwork.org

Honoring Those Who Gave the Gift of Life

NJ Sharing Network provides many services and programs to donor families to ease pain and promote healing during their difficult journey of grieving

Donor Flag Permanently Raised On June 14 — otherwise known as Flag Day — NJ Sharing Network held a ceremony where both the American flag and “Donor Family” flag were raised. The “Donor Family” flag was created to honor individuals who gave the gift of life to others through organ and

Local Hospitals Raise Donor Flag

Several New Jersey hospitals recognize and honor those who gave the gift of life through organ and tissue donation by flying a ‘Donor Flag’ outside the hospital for up to 24 hours after a donation occurs. The hospitals participating in this heartfelt practice are: • BAYSHORE HOSPITAL (HOLMDEL) • COMMUNITY MEDICAL CENTER (TOMS RIVER) • JERSEY SHORE UNIVERSITY MEDICAL CENTER (NEPTUNE CITY) • JFK MEDICAL CENTER (EDISON) • MORRISTOWN MEDICAL CENTER (MORRISTOWN) • OCEAN MEMORIAL CENTER (BRICK) • OVERLOOK MEDICAL CENTER (SUMMIT) • RIVERVIEW MEDICAL CENTER (RED BANK) • SAINT BARNABAS MEDICAL CENTER (LIVINGSTON) To learn more about how your hospital can honor organ and tissue donors, contact Alyssa D’Addio at 908-516-5432.

25 TH ANNIVERSARY EDITION

tissue donation. The “Donor Family” flag will permanently fly underneath the American flag at the headquarters of NJ Sharing Network in New Providence in order to honor organ and tissue donors daily.

Annual Donor Memorial Ceremony Pays Tribute to Organ & Tissue Donors For the past 20 years, NJ Sharing Network holds an annual ceremony in October that honors organ and tissue donors and their families. During the ceremony, several keynote speakers discuss their personal connection to organ donation and a powerful, personal video tribute of all the year’s organ and tissue donors is shown. Each family also receives several mementos that honor their loved one and the gift that he/she provided to others. Many families also contribute a quilt square during the ceremony in memory of their loved

one, which then becomes part of the next “Quilt of Love.” The “Quilts of Love” is an ongoing project to honor the memory of our donors. Right now, NJ Sharing Network is honored to have 27 beautiful quilts, with each square specially designed by donor family members and/or friends to commemorate the life of a donor. The quilts are admired by thousands of people each year at schools, hospitals, museums, libraries and places of worship throughout New Jersey.

Donor Family Council Formed NJ Sharing Network announced the formation of the Donor Family Council. An all-volunteer group, the Donor Family Council will act as a sounding board to help guide NJ Sharing Network on how best to work with donor families. Jackie Lue Raia of Mahwah and Alyssa D’Addio of Watchung, both donor family members, serve as staff liasons to the group. The ultimate goal of the Donor Family Council is to ensure that donor families are provided the necessary support to help them cope with the tragic loss of a loved one. “We also want our Donor Family Council to have a voice in how NJ Sharing Network involves donor families in other areas, such as public education and fundraising, to ensure it is done with care and compassion,” says Alyssa D’Addio. “By doing so, we can better address the unique needs of an organ and tissue donor’s family and

Members of the Donor Family Council gather outside of NJ Sharing Network.

strengthen our relationship with one of the most powerful voices that advocates for more people to register as an organ and tissue donor: the family of someone who gave the precious gift of life to others through organ donation.” To learn about ways you can become involved in the Donor Family Council, please contact Jackie Lue Raia at 908-516-5686.

What a letter

A picture is worth a thousand words! Heart recipient, Alberto Disla (center), met the family of his donor, Jose Perez at NJ Sharing Network in June.

means to me

How the lives of organ recipients and donor families become initimately connected forever

n today’s world of instant communication by email or texts, a handwritten or even a typed personal letter is basically a thing of the past. However, for organ recipients and donor families, this is not a case. A personal, heartfelt letter symbolizes how virtual strangers become intimately connected forever through a heart, kidney, intestine, liver, pancreas, or lung. For the eight years that have gone by since the untimely passing of her younger brother in 2004, Magaly Perez believed that her family would never receive the opportunity to meet the person who received Jose’s heart. “My mother always wanted to know who had my brother’s heart,” said Magaly. “I thought we couldn’t even request that and that it was totally private.” Then one day while at work, a feeling over-

came Magaly, and she felt the need to go home. She took a half-day and came home to an email from NJ Sharing Network. In the email, Magaly learned that the recipient of Jose’s heart – Alberto Disla – wrote a letter and wanted to meet Magaly and her family. Since he was six months old, Alberto suffered from a deteriorating heart condition called myocardiopathy, caused by the coxsackie virus. Over the years, it was controlled by various medications, but while studying medicine in the Dominican Republic, Alberto became so sick, he couldn’t walk up a flight of stairs, and his implantable defibrillator (ICD) shocked his heart several times a day to keep it beating. Finally, at the age of 18, his doctors sent him to Columbia Presbyterian Hospital in New York City, because at that time, heart transplants were not yet per-

formed in the Dominican Republic. Alberto arrived in New York City on a Friday, was immediately put on the heart transplant waiting list, and received a new heart the following Monday. That’s how bad Alberto’s health had deteriorated. Shortly after his heart transplant, Alberto’s father wrote a letter to thank the donor family for their incredible gift and giving life back to his son. “We didn’t hear back,” said Alberto. “So about two years ago, I decided to write my own letter. I told them that I was a doctor now, that I’m very grateful for the donated heart, and that I’d like to meet them to personally thank them.” That meeting took place June 13, 2012. (continued on page 14) www.NJSharingNetwork.org

“It is just such an amazing experience to meet a family that has given you

the gift of life

without even knowing who you are.”

What Magaly didn’t know was that a short time prior to receiving the email from NJ Sharing Network, her mother had prayed and asked to meet the man who received her son’s heart. Little did she know, her prayers would be answered just a few weeks later. “It was a beautiful experience to meet this young man and his parents. I really cannot put it into words,” explains Magaly. “There is something in this world of my brother that is still living, and it gives me comfort.” “We cried on both sides,” says Alberto when describing meeting Magaly and her mother, Carmen, and her father, Jose.

Connected by a Heart and Kidney After years of correspondence, heart recipient Roy Praschil and his wife Karen finally met the parents and sisters of his donor — Robert “Bobby” Walker, Jr. — at last year’s 5K Race to

Letter-Writing Tips for Recipients • Acknowledge your donor family’s loss with an expression of sympathy. • Say “thank you.” It may not capture all of your feelings, but it’s a start. • Tell your story – explain how your transplant experience has changed your life. Tell them about yourself, your family, your hobbies and interests. • You may want to tell the family that you would like to hear from them or meet them in the future (if they choose) and that you will respect their feelings on this matter.

Letter-Writing Tips for Donor Families • Share whatever is comfortable for you about your loved one, their hobbies and interests. • Tell them why the decision to donate was made. • Wish them well in their recovery. • If you would like to hear from them, let them know.

25 TH ANNIVERSARY EDITION

–Bryan Mueller

Save Lives. It also was the first time that Bryan Mueller would meet the Walker’s as well. Bryan was the recipient of one of Bobby’s kidneys. Roy received his new heart in 2005 after being diagnosed at 16 years of age with a genetic heart condition called hypertrophic cardiomyopathy (HCM). It caused his father’s untimely death when he was only 40 years old as well a four uncles and a cousin. Following his transplant, Roy’s life completely changed for the better. “Roy never experienced life the way he did after the transplant, even when he was in his 20’s,” explained Karen Praschil, Roy’s wife. “He didn’t ever realize how sick he was until he got a heart and realized what a healthy person is like. He really had no idea how good life could be with a healthy heart.” After realizing the full effect the transplant was having on his life, Karen decided that she needed to write a letter to the donor family, thanking them for their generous and special gift. “It took me weeks to write the letter,” says Karen. “I was so afraid of stepping over the line of excitement and joy for Roy while knowing they had experienced such unspeakable pain. It was really difficult to write.” That letter was impetuous for several rounds of communication including phone calls that led up to the Praschil’s and Walker’s decision to form a team together and take part in the 5K. While planning Team 360, Karen thought “wouldn’t it be great if we could get the recipients of Bobby’s other organs to be on our team.” That’s how Bryan Mueller became connected to Team 360 and had the opportunity to meet his donor family, the Walker’s, for the first time.

Sweet Miracles Bryan was born with a life-threatening kidney disease that went undiagnosed for several months. The condition stunted the growth of his kidneys, which eventually resulted in endstage kidney failure. At the age of 17, Bryan was

Connected by a heart and kidney. Roy Praschil and Bryan Mueller received the gift of life from Bobby Walker, Jr. and met each other and Bobby’s family for the first time at last year’s 5K Race to Save Lives.

put on the transplant waiting list and received his new kidney several months later. About a year after his transplant, he wrote a letter to his donor family to thank them for his new kidney. Four years later, the day before Christmas, Bryan received a letter from the Walker family. “It was the greatest Christmas gift ever,” says Bryan. “It was unbelievable to hear back and learn a little bit more about the family that saved my life.” After receiving his transplant and graduating from college, Bryan decided to open a small business, a bakery called Sweet Indulgences in Dumont, NJ. A very special part of the business is the philanthropic arm, called “Sweet Miracles” that gives back to the local community as a way to thank others for their random acts of kindness. In 2011, he received a call from NJ Sharing Network that the Walker’s wanted to see if he would participate in Team 360, marking the first time that they would meet in person. “It is just such an amazing experience to meet a family that has given you the gift of life without even knowing who you are,” explains Bryan. “I look up to them every day and am so grateful and blessed to have them in my life.”

Connected Forever Like the members of Team 360 – Roy, Bryan and the Walker family, as well as Alberto and the Perez family, there are thousands of other similar stories that were made possible through the old-fashioned process of putting words and feelings down on paper. It’s fascinating how lives can become connected forever by not only words and feelings, but through the generous gift of a heart or kidney.

Heartfelt excerpts from letters… When the deciwasiosnprtoesdoennatedte my son’’s orgawanss not one moment to us, there …” ” ? … e f i l a of hesitation g n i v a s r o f e n o e m o s k n a h t e n o s e o d w o H “… esence of

“…How do I tell you how much you r gift of life has meant to me and my family? I feel that we are now part of each other’s family as I think of you each day…”

“…

“…Even though I have wanted to reach out to you for a very long time, est I realize now that this is the hard thing I have ever done…”

ve the pr selves. a h ld u o w le p eo p l ia ec “...Onlypsupt the pain of others before them mind to ou for this gift of life...” Thank y

wn o d t i s o t months write down l a r e v e s e en m . The words to k a t s a h t “…I a pen and paper with come easy… ” have not

Why You May Not Receive a Letter in Return It may take months or perhaps years before an organ recipient and/or family member of a donor is ready to send and/or receive a letter. Be aware that you may never hear from them. An organ transplant is a major surgical procedure and it can take several months before a recipient feels healthy again. Other times, the transplant may not have been a complete success. Although some organ recipients may be open to receiving correspondence, others may feel overwhelmed and find it diﬃcult to express their thanks and gratitude. “Survivor’s guilt” often is felt by an organ recipient, making him/her unable to respond to a donor family letter until they come to terms with these feelings. On the other side, some donor families may not write for personal reasons. Certain people find it helpful to disconnect from situations that remind them of their loss. However, once time has passed, some donor families are able to communicate with recipients. It’s important to keep in mind that everyone has a right to privacy. And, that every individual deals with situations diﬀerently and in their own time. www.NJSharingNetwork.org

Celebrating 25 Years

Kellye Miller (pictured on right) donated a kidney to her grateful friend Morgan Johnson.

Special Thanks to Our 25th Anniversary Dinner Sponsors GOLD SPONSORS Barnabas Health

CORPORATE TICKETS

Genentech, a member of Roche Group

CJS Violations Services

Pfizer, Inc.

Brinton Eaton Document Solutions

BRONZE SPONSORS

Hackensack University Medical Center

LifeCell Corporation

Investors Bank

Musculoskeletal Transplant Foundation

Jeﬀrey Sobel Consulting

PNC Wealth Management Saul Ewing, LLP ShopRite (Village Supermarkets) Trinitas Regional Medical Center Wiss & Company, LLP

Lourdes Health System MagnetMailers.com, LLC Mark & Helen Reagan Robert Wood Johnson University Hospital SourceOne Communications Group Wells Fargo Bank, NA William H. Connolly & Co., LLC

25 TH ANNIVERSARY EDITION

More than 300 members of the organ donation and transplantation community gathered at the Short Hills Hilton on April 12, 2012 to celebrate the 25th Anniversary of NJ Sharing Network. It proved to be a special evening where organ transplant recipients and donor families were honored along with New Jersey’s transplant centers and hospital partners. One highlight of the evening was the “Walk of Life” ceremony where a living donor or donor family was paired with an organ or tissue recipient to present our hospital partners with an award. Another highlight was when Mary DiNardo, the widow of Detective Marc Anthony DiNardo of the Jersey City Police Department, received the “Ray of Hope” award. The lives of three people were saved by Detective DiNardo’s heart and two kidneys following his 2009 untimely death in the line of duty, while countless others benefited from the gift of tissue donation. A special thanks is in order for our dinner committee, which was led by Alberta D’Addio and Susan Quiroga, as well as our 26 corporate anniversary partners!

NJ Sharing Network Foundation Board Members created a fun-filled, memorable 25th anniversary celebration.

of SAVING LIVES!

Many Thanks To All Our 25th Anniversary Corporate Partners

www.NJSharingNetwork.org

ATION NE WS • FOUNDATION NE WS • FO NJ Sharing Network Foundation generates philanthropic support for the various programs of NJ Sharing Network. Your support can help increase the number of lives saved through organ and tissue donation.

FOUNDATION BOARD Donna Albanese, Chairperson Dairy Queen of Plainfield Resident of Scotch Plains

Phyllis L. Elin, Vice Chair Resident of Stewartsville

Thomas Ludlum, Esq., Treasurer City of Paterson Law Department Ludlum Law Oﬃces Resident of Glen Rock

Alberta D’Addio, Secretary

2012 is proving to be one of the most successful in recent history for the NJ Sharing Network Foundation. While we spent the year celebrating 25 years of saving lives through the gift of organ and tissue donation, we also achieved significant fundraising milestones to support our overall mission. Nearly $1 million has been raised so far in 2012 including a recordsetting total of $607,000 at the 2nd Annual Share NJ 5K Walk/Run in June, $42,000 for participants to attend the Transplant Games and over $150,000 at the Annual Golf and Tennis Classic. We couldn’t have done this without our 25th Anniversary Corporate Sponsors as well as the tens of thousands of individuals who participated in or volunteered to support our events or made a contribution to our annual fund. For all this tremendous support, we are truly thankful. While we had a spectacular year, we can’t slow down our efforts. There are close to 5,000 New Jersey residents still awaiting a life-saving transplant. We need to continue our education efforts to make sure we get as many people as possible to register to be organ and tissue donors in New Jersey. We can’t do this without your financial support. In this season of giving, I ask you to consider making a contribution to the NJ Sharing Network Foundation so that we can continue our work to save as many lives as possible.

Resident of Watchung

Marla Bace Circles, a division of Sodexo Resident of Berkeley Heights

J.D. de Leon

Elisse E. Glennon Executive Director NJ Sharing Network Foundation eglennon@sharenj.org

Resident of Jersey City

Lenore C. Ford Resident of Morristown

Randi Geﬀner Resident of Livingston

Honorable F. Michael Giles

Albanese Named “Healthcare Hero”

Resident of West Orange

Derlys M. Gutierrez, Esq. Adams Stern Gutierrez & Lattiboudere, LLC Resident of Montclair

Philip S. Kolm Investors Bank , Commercial Banking Group Resident of Fort Lee

Lisa Meyers Summit YMCA Resident of Summit

Anthony E. Pizzutillo Smith Pizzutillo LLC Resident of Lawrenceville

Mark E. Reagan Marsh, Inc., Global Construction Practice Resident of Basking Ridge

Suzann Rizzo Investors Bank Resident of Staten Island

Peter Rooney Ogilvy CommonHealth Worldwide Resident of Mendham

Donna Albanese, the chairperson of the NJ Sharing Network Foundation Board of Trustees, was named “Volunteer of the Year,” at the NJBIZ Healthcare Heroes awards ceremony in June. NJBIZ, a weekly journal that covers the business of New Jersey, honors both individuals and organizations annually who make a significant impact on the quality of healthcare in New Jersey. Donna was recognized for her decade-long advocacy for organ and tissue donation, which was spearheaded when she donated one of her kidneys to her mother.

Sandy Erwin (right), the NJ Sharing Network Foundation assistant director, congratulates Donna Albanese on receiving the NJBIZ Healthcare Heroes “Volunteer of the Year” award.

Bernard Simon Resident of Edison

Myles Varley Personal Resource Management Associates, Inc. Resident of Mount Olive Township

Ex-Oﬃcio Members: Joseph Roth

Barry Newman

President and CEO NJ Sharing Network

Chief Financial Oﬃcer NJ Sharing Network

Elisse Glennon

Board Welcomes New Member NJ Sharing Network Foundation is pleased to announce that Honorable F. Michael Giles, a retired Superior Court of New Jersey judge, has been elected as a new member of the Foundation

board. Through extensive legal experience gained both as a judge and an attorney in private practice, Michael will be a great asset in helping the Foundation achieve its overall goals.

Executive Director NJ Sharing Network Foundation

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25 TH ANNIVERSARY EDITION

OUNDATION NE WS • FOUNDATION NE WS Foundation Director Honored by Irish Business Association Congratulations to Foundation Executive Director Elisse Glennon who was honored with the “2012 Woman of the Year Award” by the Irish Business Association (IBA) at its awards ceremony in June. Each year the award is presented to a NJ woman in recognition of her efforts in supporting the mission of the IBA. “New Jersey is home to some of the nation’s most dynamic business leaders, many of whom are women,” says Elisse Glennon. “I am honored to be recognized for both my professional and personal commitments in New Jersey.”

Engaging our Volunteers

Sandy Erwin, assistant director of the NJ Sharing Network Foundation, gives monthly guided tours of NJ Sharing Network’s headquarters to groups of new volunteers. To volunteer, please contact Sandy at 908-516-5695.

Landscape of Life On May 24, the NJ Sharing Network Foundation hosted a Landscape of Life ceremony to recognize the new honorees. The Landscape of Life tribute wall acknowledges contributions made in the honor or memory of organ and tissue donors, transplant recipients and members of the community.

The family of Courtney Dayback is pictured in front of the Landscape of Life memorial.

”Journeys of the Heart“ Float Underway Construction is underway for the Donate Life float that will ride in the annual Tournament of Roses Parade in Pasadena, California on January 1, 2013. The theme of the float is “Journeys of the Heart,” representing the new life made possible by organ and tissue donation. The NJ Sharing Network Foundation will be sponsoring heart transplant recipient and Foundation board member, Mark Reagan, to travel to Pasadena to represent New Jersey at the annual celebration of the gift of life.

Scholarship Awarded to Future Transplant Surgeon

Kelsea A. Longo (center) was awarded NJ Sharing Network Foundation’s Benjamin R. Chirls Scholarship.

This year’s Benjamin R. Chirls Scholarship was awarded to Kelsea A. Longo of Nutley, a teen whose ultimate goal in life is to become a transplant surgeon because of her own firsthand experiences with both sides of organ and tissue donation. Presented annually to a designated organ or tissue donor, living donor, transplant recipient, donor family member or an advocate for organ and tissue donation, the $4,000 scholarship is named in memory of Benjamin Chirls, a kidney recipient who worked tirelessly for years to educate the public about the importance of organ donation. Kelsea set her sights on becoming a physician following the tragic loss of her aunt and best friend who both became organ donors and then experiencing the celebration of life when her uncle received a double lung transplant after suffering from pulmonary systemic fibrosis. She plans to begin her study of biology at Northeastern University in the Fall. “My hopes are that by sharing my story, I will drive others to sign up to be donors and to begin a ripple effect of spreading awareness of organ and tissue donation,” shared Kelsea. Good luck to Kelsea on her studies and we look forward to learning more about her future achievements!

OUNDATION NE WS • FOUNDATION NE WS www.NJSharingNetwork.org

THOUSANDS CROSS FINISH LINE IN RACE TO SAVE LIVES Record Funds Raised at Second Annual 5K Race Seas of color from the t-shirts of nearly 5,000 people filled NJ Sharing Network’s parking lot and lined the starting line of the 5K race route. Each t-shirt – whether it was red, blue, green, yellow, black or white – was specially designed with love to celebrate the lives of loved ones lost who gave unselfishly to save the life of another or loved ones who were given a second chance at life. No matter the story, the spirit behind organ and tissue donation was in full force on Sunday, June 10. A total of $607,000 was raised during this year’s race, surpassing last year’s inaugural total of $450,000. Funds raised by the NJ Sharing Network Foundation support donor families, research, and education about organ and tissue donation and transplantation. Thanks to everyone who participated as this could not have happened without you! We look forward to seeing you on Sunday, June 9, 2013 at next year’s celebration.

Were you there? Check out hundreds of photos from

25 ANNIVERSARY EDITION

Thanks to our sponsors: PRESENTING SPONSOR

HOSTED IN CONJUNCTION WITH

ADDITIONAL RACE SPONSORS: Adams Stern Gutierrez & Lattiboudere, LLC ASA Apple Barnabas Health Brinton Eaton CJS Violations Services Document Solutions Ethicon Genentech, a member of Roche Group Hackensack University Medical Center The Hampshire Companies International Institute for the Advancement of Medicine Investors Bank JeďŹ&#x20AC;rey Sobel Consulting LifeCell Corporation Mark & Helen Reagan

MagnetMailers.com, LLC Meridian Health Musculoskeletal Transplant Foundation Novartis Ogilvy CommonHealth Worldwide Overlook Medical Center PNC Wealth Management Robert Wood Johnson University Hospital Saul Ewing, LLP ShopRite (Village Supermarkets) TSS Wells Fargo Bank, NA William H. Connolly & Co., LLC Wiss & Company, LLP

the 2012 5K Race at www.NJSharingNetwork.org www.NJSharingNetwork.org

ATION NE WS • FOUNDATION NE WS • FO

DONATION

matters

Gold, Silver and Bronze Won at Transplant Games While success was measured through medals won, the true celebration for athletes participating in the 2012 Transplant Games of America was life itself. If not for the selfless act of their donors, the athletes of Team Liberty would not have had the opportunity to participate in the multi-sport games held in Michigan from July 28 to 31. A program of the NJ Sharing Network Foundation, Team Liberty is comprised of New Jersey, New York and Connecticut athletes who have been touched by organ and tissue donation. This year’s team of 18 athletes participated in several events including a 5K run, bowling, golf, swimming, table tennis, tennis, and track and field. At the end of the competition, a total of 50 medals were won by Team Liberty. Congratulations Team Liberty!

Hampshire Real Estate Donates $100,000 Morristown-based Hampshire Real Estate, a real estate investment fund manager and owner of the building leased by NJ Sharing Network in New Providence, recently made one of the largest single gifts ever to the NJ Sharing Network Foundation. The company contributed $100,000 to support the ongoing work of NJ Sharing Network, including education initiatives designed to save and enhance as many lives as possible through organ and tissue donation. “Some us of at Hampshire Real Estate have been touched by organ donation and experienced close-hand the value of NJ Sharing Network,” said Norman A. Feinstein, Vice Chairman of the Hampshire Companies. “We all felt it was important to support this valuable and life-saving work.” Thank you to Hampshire Real Estate for this generous gift!

Creative Giving

3 1. Liver recipient Bonnie Farbstein from Fair Lawn, NJ, took the Gold Medal in Women's Tennis Singles; 2. Hillsborough resident and heart recipient, Joseph DiSanto, won the Bronze Medal in the golf tournament; 3. Members of Team Liberty traveled to Grand Rapids, Michigan for the Transplant Games

NJ Sharing Network Foundation supporters have shared some of the most creative ways they have contributed — even in a tough economy. When planning a wedding, anniversary bash, Bar/Bat Mitzvah, sweet 16 and other milestone events, instead of spending money on candles and picture frames, consider a contribution to your favorite charity…NJ Sharing Network Foundation. Be sure to let your guests know in lieu of favors you have made a contribution to support organ and tissue donation. If you have creative ideas for giving —especially on a budget— please email them to Sandy Erwin at serwin@sharenj.org.

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25 TH ANNIVERSARY EDITION

OUNDATION NE WS • FOUNDATION NE WS Foundation Grants Fund Special Memorials at NJ Hospitals NJ Sharing Network Foundation has funded grants to create special memorials to honor organ and tissue donors at several area hospitals. Some of these memorials include:

Zan’s Garden of Life Jersey Shore University Medical Center is home to “Zan’s Garden of Life,” a donor memorial garden named after Alexandra “Zan” Tozzi, who at the age of 13 gave the gift of life through organ donation. A bronze statue depicting the image of a young girl holding a butterfly in one hand, symbolizes the lives saved by Zan, and the other hand releasing several butterflies, symbolizes a new life made possible by all the organ and tissue donors from the hospital. The names of organ and tissue donors are engraved in bricks that surround the statue in the garden.

Wall of Heroes Jersey City Medical Center displays pictures of organ and tissue donors, in addition to heartfelt letters from recipients, to demonstrate the impact of giving the gift of life.

Garden Walk Memorial Cooper University Hospital in Camden is in the process of developing a memorial that will be housed along their “Garden Walk,” which will feature an LCD display where pictures of organ and tissue donors will be shown while the names of the honorees will be permanently etched on glass panels.

Drag Racing Team Shows Support

Andrea Pedregon and her husband, two-time Funny Car series champion Tony Pedregon, presented Alida Sandoval of NJ Sharing Network Foundation with a $2,500 check.

The Andrea Pedregon Charity Foundation, also known as “A Spark of Hope,” recently presented $2,500 to the NJ Sharing Network Foundation in memory of organ and tissue donor Heather Anne Aurora. Following a tragic pedestrian accident, Heather donated kidneys, heart valves, corneal tissue and skin. The generous contribution was presented on June 2 at Heather’s home track, Englishtown, during the National Hot Rod Association’s Toyota SuperNationals.

ABOVE: The parents of BJ Giannone in front of his tribute featured on the Jersey City Medical Center’s Wall of Heroes. LEFT: Mark and Tina Hubbard with daughters, Kimberly and Kiley (pictured right), a kidney recipient, at a benefit dinner and concert at Bar Anticipation in Lake Como on August 19. The event raised funds to help restore and maintain Zan’s Garden of Life.

Heart Recipient “Paying it Forward” “Paying it forward” just may accurately describe the actions of heart recipient and steward of philanthropy, Elliott Kominsky, who recently pledged an ongoing monthly gift to the NJ Sharing Network Foundation. “I have an attitude that you have to give back,” states Elliott.“Without NJ Sharing Network and Newark Beth Israel Medical Center, I would not be alive today. I have committed myself to do as much as I can to help other people who find themselves in my situation.” A retired certified public accountant (CPA), Elliott truly understands the numbers behind the need to increase the amount of people in New Jersey who are registered organ and tissue donors. In addition to his generous contribution, Elliott actively volunteers for NJ Sharing Network to register as many people as possible. In fact, at a Family Day event in Perth Amboy in early August, Elliott was instrumental in registering more than 40 individuals to become organ and tissue donors. Now, that is a genuine example of paying it forward.

To pledge a monthly contribution—no matter how small— please contact Kathy Aitchison at kaitchison@sharenj.org

OUNDATION NE WS • FOUNDATION NE WS www.NJSharingNetwork.org

2012 – HIGHLIGHTS & FAST FACTS 2012 FAST FACTS

2012 NJ ORGAN AND TISSUE DONORS BY HOSPITAL

115,000 people are waiting for a life-saving transplant nationwide… …and 18 people die each day waiting.

Organ

In New Jersey alone: –72 people wait for a heart transplant –4,071 people wait for a kidney transplant –528 people wait for a liver transplant –31 people wait for a lung transplant Fast Fact #1 Close to 5,000 NJ residents are awaiting a life-saving transplant. Fast Fact #2 One organ donor can save up to eight lives and restore health to 50 others.

Overlook Hospital Helene Fuld Medical Center Robert Wood Johnson University Hospital UMDNJ, The University Hospital Jersey Shore University Medical Center St. Joseph's. Paterson Valley Hospital Jersey City Medical Center Hackensack University Medical Center Morristown Medical Center Raritan Bay Medical Center, Perth Amboy Cooper University Hospital Medical Center John F. Kennedy Medical Center Saint Barnabas Medical Center Community Medical Center Newark Beth Israel Medical Center Robert Wood Johnson, Hamilton Trinitas Hospital Ocean Medical Center St. Francis Medical Center St. Mary’s Hospital, Passaic Robert Wood Johnson, Rahway Somerset Medical Centre Riverview Medical Center Our Lady Of Lourdes Chilton Memorial Hospital Bayshore Community Hospital

Bone 6 5 5 5 4 4 4 3 3 3 3 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1

DONATE LIFE REGIONAL GROUPS These task forces created throughout the state gather representatives from local regions to create strategic initiatives for reaching the nationwide goal of 50% registered organ and tissue donors. We partner with businesses, government agencies, houses of worship, schools, hospitals, police/fire/EMS departments, and other organizations. If you are interested in becoming part of your local group, please contact the leader nearest you: REGION

REGION LEADER

REGION CONTACT INFO

Bergen/Passaic

Jackie Lue Raia

jlueraia@sharenj.org

Monmouth/ Ocean

Whitney Downer

wdowner@sharenj.org

Bayonne/ Jersey City

MaryAnn Rosenberg Barbara Kuzminski

gmhsjj@gmail.com bkuzminski@saintpeters.edu

Mercer

Whitney Downer

wdowner@sharenj.org

Somerset/ Hunterdon

Tom Pierno

tppierno@gmail.com

Essex

Alyssa D'Addio

adaddio@sharenj.org

Newark

Lernard Freeman

lfreeman@sharenj.org

Middlesex

Jackie Lue Raia

jlueraia@sharenj.org

Warren

Sandy Erwin

serwin@sharenj.org

Sussex

Barbara Kellam-Scott

bkswrites@yahoo.com

Union/Morris

Elizabeth Stamler

elizabeth.stamler@gmail.com

24 24

25 TH ANNIVERSARY EDITION

Morristown Medical Center Hackensack University Medical Center Morris County Medical Examiner Overlook Hospital Somerset Medical Center Robert Wood Johnson University Hospital Helene Fuld Medical Center St. Joseph's Hospital, Paterson Jersey City Medical Center Monmouth County Medical Examiner RWJ University Hospital, Hamilton Our Lady Of Lourdes Newark Beth Israel Medical Center Englewood Hospital Chilton Memorial Hospital Hunterdon Medical Center Centra State Medical Center Union County Medical Examiner Clara Maass Medical Medical Center Raritan Bay Medical Center Perth Amboy Jersey Shore University Medical Center John F. Kennedy Medical Center Riverview Medical Center Newton Memorial Hospital Community Medical Center Cooper University Hospital St. Mary’s Hospital, Passaic St. Clare’s Hospital, Dover St. Clare’s Hospital, Denville Mountainside Hospital Hoboken University Medical Center University Hospital Ocean Medical Center Hackettstown Community Hospital Meadowlands Hospital Saint Barnabas Medical Center Bayshore Community Hospital Capital Health Hopewell Raritan Bay Medical Center, Old Bridge Valley Hospital St. Joseph's Hospital, Wayne Holy Name Hospital St. Francis Medical Center St. Peters Medical Center Trinitas Hospital St. Clare’s Hospital, Sussex Warren Hospital Bayonne Hospital Bergen Regional Medical Center Bergen County Medical Examiner

Skin 8 7 5 4 4 4 4 4 4 4 3 3 3 3 3 3 3 3 2 2 2 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 0 0 0 0 0 0 0 0 0

Overlook Hospital RWJ University Hospital, Hamilton Morristown Medical Center Robert Wood Johnson University Hospital Helene Fuld Medical Center St. Joseph's Hospital, Paterson Hunterdon Medical Center Riverview Medical Center Community Medical Center Morris County Medical Examiner Somerset Medical Center Our Lady Of Lourdes Jersey Shore University Medical Center Englewood Hospital Centra State Medical Center Union County Medical Examiner Cooper University Hospital University Hospital Ocean Medical Center Valley Hospital Hackensack University Medical Center Jersey City Medical Center Newark Beth Israel Medical Center Chilton Memorial Hospital Raritan Bay Medical Center Perth Amboy St. Mary’s Hospital, Passaic St. Clare’s Hospital, Denville Mountainside Hospital Hackettstown Community Hospital Warren Hospital Monmouth County Medical Examiner John F. Kennedy Medical Center Newton Memorial Hospital Meadowlands Hospital Saint Barnabas Medical Center Bayshore Community Hospital Capital Health Hopewell Raritan Bay Medical Center, Old Bridge St. Joseph's Hospital, Wayne Holy Name Hospital St. Francis Medical Center St. Peters Medical Center Trinitas Hospital St. Clare’s Hospital, Sussex Bayonne Hospital Bergen Regional Medical Center Bergen County Medical Examiner Clara Maass Medical Medical Center St. Clare’s Hospital, Dover Hoboken University Medical Center

9 6 5 5 5 5 5 5 5 4 4 4 4 3 3 3 3 3 3 3 2 2 2 2 2 2 2 2 2 2 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 0 0 0

Data collected from January - June 2012

YEAR-TO-YEAR MOTOR VEHICLE REGISTRANTS BY COUNTY In North and Central New Jersey, less than one-third of adult licensed drivers are registered organ donors. Motor Vehicle Commission data for the 14 counties in NJ Sharing Network’s coverage area for the first half of 2012 shows how each county compares to New Jersey state totals last year. County

2011 % Registrants

(Q2) 2012 % Registrants

BERGEN ESSEX HUDSON HUNTERDON MERCER MIDDLESEX MONMOUTH MORRIS OCEAN PASSAIC SOMERSET SUSSEX UNION WARREN

28.4% 24.8% 24.9% 44.0% 32.7% 26.6% 34.5% 38.9% 32.5% 24.9% 34.9% 40.9% 27.6% 38.3%

28.7% 25.4% 25.6% 44.4% 33.1% 27.1% 34.9% 39.2% 32.8% 25.2% 35.4% 41.2% 28.2% 38.6%

1.2% 2.4% 2.9% 1.0% 1.2% 1.7% 1.2% 0.9% 0.8% 1.2% 1.4% 0.9% 2.3% 0.7%

TOTAL STATE

30.2%

30.7%

1.5%

NEW JERSEY MOTOR VEHICLE AGENCIES SEE RECENT SPIKE IN REGISTERED DONORS

Year-over-year % Growth

MINORITY ORGAN DONATION AND TRANSPLANTATION STATISTICS In 2011, of the 2,730 minority deceased and 1,779 minority living donors nationwide, NJ had 65 minority deceased donors and 68 minority living donors. In the US, 11,529 minority patients received organ transplants – including 254 in NJ.

Jackie Lue Raia (right) and Gwen Anderson (left) the recipient of Raia's mother's kidney, share a moment during a press conference at UMDNJ-The University Hospital.

Across the nation… Minorities make up 36% of the US population and comprise 56% of individuals on the US transplant waiting list. They represent 30% of living donors and 34% of deceased organ donors. Here in New Jersey… Minorities make up 44% of the state’s population and account for 60% of patients on the organ transplant waiting list. They represent 36% of living donors and 46% of deceased organ donors.

A first-ever report reveals the percentage of drivers registered to be organ and tissue donors at North and Central New Jersey motor vehicle agencies has spiked almost 10 percent in the first six months of 2012, with the greatest increase seen at the Newark MVA. Across the state, the percentage of people signing up to be donors last year remained flat, making the increase in Central and North Jersey unique and gratifying. The report also found that Flemington had the highest donor registration rate at 50 percent, while five other communities — Newark, Wallington, Oakland Bayonne, and Toms River — achieved donation rate increases of more than 15 percent. This data was part of a NJ Sharing Network report called Donor Designation & Minority Transplantation Profile for New Jersey 2012 that was released in August 2012 at a press conference at University Hospital in Newark in conjunction with National Minority Donor Awareness Week, a nationwide observance that aims to educate minorities about the ongoing, desperate need for organ and tissue donors within multicultural communities nationwide. Minorities in NJ comprise 60 percent of people on the U.S. transplant waiting list, while only representing 36 percent of living donors and 46 percent of deceased donors. NJ Sharing Network credits ongoing community-based outreach initiatives and an enhanced relationship with the NJ Motor Vehicle Commission for this increase in organ donor registration. The report was also covered by media including The Star-Ledger, NJ 101.5 radio, News 12 New Jersey and Fios 1 TV, aiding in further educating the public about the importance of organ and tissue donation.

www.NJSharingNetwork.org

National Donor Sabbath Spreads Spiritual Messages of Giving Faith-Based Outreach Eﬀorts Encouraged Year-Round Two weekends before Thanksgiving every November marks National Donor Sabbath — a time where religious congregations celebrate the season of giving, including giving the gift of life through organ and tissue donation. Endorsed by the US Department of Health and Human Services, National Donor Sabbath is a movement where faith leaders across the country raise public awareness about the critical need for organ and tissue donors and encourage people to register to be a donor. As part of NJ Sharing Network’s ongoing faith-outreach initiative, various activities and events have extended this celebration yearround. • Faith leaders from around the state gathered October 10 at NJ Sharing Network to learn more about how they could share the life-saving message of organ and tissue donation during Donor Sabbath and throughout the year. Religious leaders from the Christian, Jewish, Buddhist and Muslim communities also talked about their support and personal experiences with donation and how they incorporate that message into their services.

• Production of two videos in collaboration with Clear Channel and Comcast Cable to help educate about the importance of organ and tissue donation. The Comcast Cable video featured personal testimonials about organ and tissue donation from ethnically diverse donor families, recipients and faithbased leaders. The Clear Channel video for online viewing featured radio personalities DJ Envy of Power 105.1 FM and Cubby of WKTU-FM conducting “man-on-the-street” interviews asking people what they knew about organ and tissue donation. • NJ Sharing Network partnered with organizers of the Navrati Hindu Cultural Festival in Jersey City and local Baptist conventions, as well as temples, churches and mosques across the state to conduct organ and tissue donation awareness presentations. • Heart recipient and senior education and partnerships manager of NJ Sharing Network, Jessica Melore, spoke during Sunday Mass on July 22 to educate the congregation of St. Peter and Paul in Hoboken about the importance of organ and tissue donation.

FACT OR FICTION?

Following Jessica’s presentation, one of the visiting Priests in attendance, Father Bismarck, shared with the congregation that he recently decided to become an organ donor after not being one previously. A special thanks to Maryann Rosenberg, co-leader of Donate Life Bayonne/Jersey City who helped organize this very successful event. To learn more about how you can help NJ Sharing Network’s efforts during National Donor Sabbath and beyond in 2013, please contact Jessica Melore at 908-516-5688 or jmelore@sharenj.org.

Ways You Can Help • Ask your religious leader to share his/her support for donation or have a guest speaker during a service • Contact NJ Sharing Network for sample scriptures, resources, and volunteers

Some common misconceptions about organ and tissue donation:

• Host an organ and tissue donation information table at faith events and before/after services

MYTH: It’s against my religion to donate my organs and tissue.

• Include information about organ and tissue donation and how to register in the house of worship’s bulletins, newsletters, and web

FACT: All major faiths and denominations in the US support both living and deceased donation.

MYTH: Organ donation prevents people from being buried in a timely manner. FACT: Organ donation does not have to delay the burial of loved ones. NJ Sharing Network will work with the hospital, transplant centers and funeral director to ensure that donation and burial/ funeral arrangements are possible and timely.

Jessica Melore with Father Bismark of St. Peter and Paul in Hoboken following her presentation at a recent Sunday Mass.

25 TH ANNIVERSARY EDITION

EVENT SPONSORS PRESENTING SPONSOR Barnabas Health

GOLD SPONSOR Mark & Helen Reagan

SILVER SPONSORS Brinton Eaton Genentech, a member of Roche Group Hackensack University Medical Center LifeCell Corporation Musculoskeletal Transplant Foundation Pfizer, Inc. Robert Wood Johnson University Hospital ShopRite (Village Supermarkets) Wells Fargo Bank, NA Wiss & Company, LLP

Document Solutions Investors Bank Lourdes Health System MagnetMailers.com, LLC Ogilvy CommonHealth Worldwide Raritan Bay Medical Saul Ewing, LLP The Hampshire Companies William H. Connolly & Co.

The first day of October proved to be a spectacular day for the NJ Sharing Network Foundation at the 14th Annual Golf & Tennis Classic at Plainfield Country Club. Foundation Board member and donor mom Suzann Rizzo addressed the golfers before the shotgun start of the event, which raised more than $150,000. More than 100 golfers took advantage of the opportunity to play at the top-ranked golf course, home to the 2011 Barclay’s. Foundation Board Chair and living kidney donor Donna Albanese also welcomed the 24 tennis players to the outing. Following the day-long event, attendees were invited to an evening reception where they were addressed by keynote speaker, Mike Strusiak, a kidney and pancreas transplant recipient. Attendees also had the chance to win numerous prizes through the tricky tray/silent auction. A special thanks to all who participated!

TENNIS PRESENTING SPONSORS CJS Violations Services Evergreen Millennium Capital Inc

TENNIS REFRESHMENT SPONSOR Davis Enterprises

BRONZE SPONSORS

FOOD STATION RECEPTION & AWARDS CEREMONY SPONSOR

ASA Apple

A&A Benefits Consultants

EVENT COMMITTEE Peter Rooney, Committee Chair Alli Keleman Event Coordinator Alida Sandoval Event Coordinator Donna Albanese

Alberta D’Addio Elisse Glennon Philip S. Kolm Jackie Lue Raia Barry Newman Gerry Vadas

More photos from the Golf & Tennis Classic can be found at www.NJSharingNetwork.org www.NJSharingNetwork.org

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Diary of a Recovery Specialist

The flashing red lights and the piercing sound of a blaring siren remind me of the life-saving organ I have been entrusted with. As a recovery specialist from NJ Sharing Network, I realize that time is crucial, so I cautiously race through traﬃc to get to the hospital. I know waiting at the hospital is the patient that will receive the organ that I so carefully packaged and labeled only 40 minutes earlier. Thoughts of the donor fill my mind as I pull into the hospital. The loss the

family must feel saddens me and I say a quick prayer for them. I have to remind myself to remain confident as I assist the surgeon to recover the organs. I have been highly trained and am thankful for having a steady hand. Once recovered, I perfuse the organs with the solutions that will give them the best chance to stay viable and function when transplanted into the recipient(s) who so desperately need them. My phone rings as I am backing out of the hospital. I have been called to do a tissue recovery. I will be working with three other colleagues. We have been trained to surgically recover all tissue that is procured for NJ Sharing Network. Bone, skin, ligaments, heart valves and saphenous veins are tissue that can be used to enhance and sometimes save the lives of others. As the recovery is ending, I lean down and take a moment

SAVE THE DATE April 2013

June 9, 2013

Donate Life Month

5K Race to Save Lives

Events scheduled throughout the state

NJ Sharing Network HQ New Providence, NJ

to touch the shoulder of the donor and thank him for his gift. No one has to see me, but it’s okay if they do. I always hold the donors in the highest esteem and want to acknowledge them for their life-saving and life-enhancing gift. I never know what will happen during my 48hour call period. I could be running to a waiting plane with a transplant surgeon to assist with the recovery of a heart, lungs or a liver, or packing supplies and instruments for a case. Despite how tired I may feel, I never forget that there are lives to be saved. I do my job with respect, dignity and am always grateful for the organs that are being shared. I know that we are honoring the wishes of the donors and their families. Each donor is special to me. I realize that this person is somebody’s loved one, and that there is a family who is giving to help others at a time of loss and sorrow.

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