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THIRD QUARTER 2016

A NEWSLETTER FOR GIFT OF HOPE’S PARTNERS AND FRIENDS

CONNECTIONS

THIS ISSUE DONOR FAMILY MEETING Lorenzo Garcia Park Greatest Gift Campaign Transplant Games of America

CONNECTIONS IN THIS ISSUE

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Donor Family, Recipients Meet Four families, connected through the lifesaving process of donation, met for the first time during a private gathering at Gift of Hope.

A Boy with a Golden Heart

The Village of Steger will honor a young donor by creating the Lorenzo Garcia Park of Hope within Steger’s larger Veteran’s Memorial Park.

The Greatest Gift in the World Gift of Hope’s first Spanish-language advertising campaign seeks to raise awareness of organ and tissue donation among Latinos.

2016 Transplant Games Recap Team Illinois had a record-breaking week at the 2016 Transplant Games of America, winning 75 medals during the weeklong competition.

PRESIDENT/CEO J. Kevin Cmunt CHIEF POLICY OFFICER Elizabeth Lively 630/758-2609 elively@giftofhope.org MANAGER OF COMMUNICATIONS AND MARKETING Therese Michels 630/758-2603 tmichels@giftofhope.org MANAGING EDITOR Tony Sullivan 630/758-2721 tsullivan@giftofhope.org CONTRIBUTORS Nesha Logan 630/758-2743 nlogan@giftofhope.org Veronica Moreno 630/758-2799 vmoreno@giftofhope.org Marion Shuck 630/758-2616 mshuck@giftofhope.org Sonia Sotello 630/930-5831 ssotello@giftofhope.org

On the Cover

Liver transplant recipient EJ Maldonado and Juan Carlos Caicedo, MD, EJ’s transplant surgeon, are at the center of Gift of Hope’s Greatest Gift in the World advertising campaign, which seeks to raise awareness of organ and tissue donation among Latinos and encourage them to register as donors. The campaign shares EJ’s poignant story of enduring several major lifesaving surgeries and ultimately receiving a transplant that saved his life and gave him the opportunity to grow up like any other little boy his age.

Connections provides the Gift of Hope public and professional communities with news and information about Gift of Hope, organ and tissue donation and the importance of being a registered organ and tissue donor. We encourage you to share this newsletter with your friends and associates and learn more about donation by visiting GiftofHope.org. We mail Connections to people who have expressed an interest in Gift of Hope or the topic of organ and tissue donation. If you would like to be removed from our mailing list, please email your request to tsullivan@giftofhope.org.

Copyright © 2016. All Rights Reserved.

Gift of Hope Unites Donor Family, Transplant Recipients GATHERING BRINGS GIFT OF ORGAN AND TISSUE DONATION FULL CIRCLE

Four families, connected through the lifesaving process of organ and tissue donation, were brought together for the first time during a private gathering that Gift of Hope coordinated. The meeting, held at Gift of Hope’s Itasca, Ill., headquarters on Aug. 31, united the family of Chicago Police Department veteran Jonathan Ho with three of the five people whose lives he saved through his selfless decision to be an organ and tissue donor.

The moving event marked the one-year anniversary of Ho’s death on Aug. 25, 2015, when an offduty motorcycle accident cut his life short at the age of 35. Ho’s wife, Christine, and their two children, Brycen, 12, and Taylor, 10, met and connected with the people whose lives their husband and father helped to save.

Ho was remembered and recognized for his lifesaving legacy as a police officer, father, husband and donor.

Christine Ho, center with children Brycen and Taylor, met the people who received the lifesaving gifts her husband Jonathan offered as an organ and tissue donor at an emotional gathering on Aug. 31 at Gift of Hope. Sulfia Sekh (second left) received one of Ho’s kidneys, Marisol Rivera-Dominguez (fourth right) received his other kidney and George Carr (second right) received his liver.

Kovler Organ Transplantation Center in Chicago, expressed what Ho’s donation meant to her. “I am very thankful to Jonathan for the donation of his kidney and to Gift of Hope,” Sekh said. “Without his gift it would be very difficult for me to continue life on this earth. This is a very noble and honorable gift to another human being regardless of race, color or religion so that others can continue living.”

The transplant recipients and their families waited a year to meet their donor family in person. Susan Carr, wife of liver transplant recipient George Carr, said, “I thought about writing to Christine many times but found it difficult to say, ‘Sorry for your loss, and thank you for my husband’s life.’ on paper. I was so happy to find out that we would finally be able to say thank you in person.”

Christine Ho expressed how it felt to meet the people who received her husband’s gifts. “I was nervous because I didn’t know The Ho family produced wristbands how I would feel or react, and I could tell to honor Jonathan Ho that Brycen and Taylor were nervous as and the gifts of life he “Today I was in awe of the strength it took offered as an organ well,” she said. “As we met the families, I Christine and her family to be reminded of and tissue donor. could feel a calmness come over me and their loss,” said George Carr, who received my children at the thought that part of his transplant at Loyola University Medical Jonathan lives on in them. This is extremely helpful to Center in Maywood, Ill. “I realize that every day I us as we go through our healing process.” wake up would not be possible if it were not for Jonathan’s gift. Because of it, I get to continue living.”

Marisol Rivera-Dominguez, who received one of Ho’s kidneys at Chicago’s Rush University Medical Center, Kevin Cmunt, President/CEO of Gift of Hope, spent explained the mixed feelings she experienced that the morning with the families and underscored the day. “I felt sad for their pain and loss but at the same importance of the gathering. “When we are able time so incredibly grateful to them and happy for the to bring donor families and transplant recipient gift of life that they gave me,” Rivera-Dominguez said. families together, we bring donation full circle and “I am alive because, despite their pain, they chose to witness first-hand the positive impact that it has help others.” on everyone,” he said. “The families we serve are the driving force for us to continue working hard to The recipient of Ho’s other kidney, Sulfia Sekh, who educate the public about the lifesaving benefits of received her transplant at Northwestern Medicine’s donation.”

Liver transplant recipient George Carr, with wife Susan, said he knows he wakes up every day to continue living thanks to the gift of life that Jonathan Ho and his family offered.

Kidney recipient Marisol RiveraDominguez, with daughter Joselin Garay, said she is alive because the Ho family chose to help others, despite their pain.

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A Boy with a Heart of Gold

Park of Hope Honors Young Steger ‘Superhero’

Twelve-year-old Lorenzo Garcia idolized superheroes.

Ironman was his favorite. And just like Ironman’s creator, Tony Stark, the kindhearted sixth-grader from Steger, Ill., hoped to use his very own superpowers to one day help others.

Tragically, Lorenzo’s life was cut short following an accident in July 2015. But his dreams of becoming a superhero came true when his family made the courageous decision to donate his organs.

“I knew in my heart it was the right thing to do,” explained Lorenzo’s mother, Karla. “That’s what a superhero does: He saves lives.

And Lorenzo was always ready to help somebody.”

ornamental boulders, a marble bench, a brick retaining wall, a book box, and engraved plaques to commemorate loved ones.

On July 17 of this year, Park of Hope board members, Supramaniam-Liddell among them, held a special event to officially unveil their plans and launched a fundraising campaign to cover the park’s costs. Additional funds raised will be donated to Gift of Hope.

“About a week after Lorenzo’s passing, Jeirmyri asked, ‘Can we do something so that we never, ever forget Lorenzo?’” SupramaniamLiddell said. “That’s when the vision of this memorial was born.”

What began as a small tribute to a friend quickly morphed into something much bigger — a full-fledged community park adorned with a variety of trees, shrubs and flowering plants,

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For more information about the Lorenzo Garcia Park of Hope, visit the park’s Facebook page (bit.ly/2bct7Qa) or call 708/404-3810.

Lorenzo’s friends and family were the honored guests at the emotional gathering held at the Louis Sherman Community Center in Steger. Village officials, including Mayor Kenneth Peterson Jr. and representatives from Gift of Hope, also attended. The meeting room, decorated in a superhero theme with colorful balloons and pictures of Lorenzo, was filled to capacity.

“Friends, Lorenzo stands in the midst To honor his life — and his gifts of us today in the spirit of a warrior, of life — friends and family joined a hero,” Supramaniam-Liddell told Karla Garcia, Lorenzo’s forces to establish a park in his guests. “Lorenzo planted the seeds of mother, said Lorenzo’s memory. In late 2015, the Steger hope, faith, love and courage not only lifesaving gifts made him Board of Trustees approved the the superhero he always for those who received his organs but wanted to be. creation of the Lorenzo Garcia for their generations to come. Most Park of Hope to be located within importantly, he taught us to live with Steger’s larger Veteran’s Memorial Park. love that’s unconditional.”

Support for the park in this village located just south of Chicago has snowballed since nineyear-old Jeirmyri Liddell first approached his mother Mary Supramaniam-Liddell about a way to honor his friend Lorenzo.

The presentation ended with a touching video tribute to Lorenzo, the young boy with a heart of gold, and a moving message that established Lorenzo’s legacy: “A brother, a friend, a hero, Lorenzo challenges us to live courageously with love.”

Event organizer Kenneth McAllister displays plans for the Park of Hope along with Steger Mayor Kenneth Peterson (second right). Gift of Hope President/CEO Kevin Cmunt (right) and Donation Specialist Damon Marks also attended the park unveiling.

“This is the first time a community has come together to create a lasting tribute like this,” Gift of Hope President/CEO Kevin Cmunt added. “Someday, someone will be telling their grandchildren, ‘I’m alive today because of this little boy.’”

With completion expected this fall, the Park of Hope will serve as a sanctuary for community members to reflect on the lives of those they have loved and lost.

“It was very easy for us to support this project from the beginning,” Peterson said. “We’re excited about it.”

The Lorenzo Garcia Park of Hope is the end result of Jeirmyri Liddell’s (center) wish to keep his friend’s memory alive.

White House Organ Summit Targets Transplant Waiting Lists A new push is underway to help the more than 120,000 people currently on organ transplant waiting lists across the nation — including 5,000 in Illinois and 1,400 in Indiana — to shorten or end their waits for lifesaving transplants. Details of the coordinated, nationwide initiative emerged at the White House Organ Summit held in June.

The summit, held in response to President Barack Obama’s call to action to reduce the waiting list for organ transplants, produced a major outcome: The White House, organ procurement organizations like Gift of Hope, transplant centers and social media organizations are now teaming up to take achievable, near-term actions designed to make more transplantable organs available and deepen the pool of registered donors.

“We applaud the Obama Administration’s efforts to identify and implement key actions to reduce the organ transplant waiting list,” said Gift of Hope President/CEO Kevin Cmunt. “The ideas and actions coming out of the White House Summit mirror much of what we have been doing on a local level in Gift of Hope’s service area. They outline a set of actions that can improve outcomes for people waiting for organ transplants, encourage more registrations and provide support for new donation-related clinical research and innovations that can increase the number of transplants.”

Key White House Actions

The Obama Administration sees organ transplant waiting lists as a problem that can be solved. It used the summit as a forum to announce three key actions to improve outcomes for people waiting for transplants and provide support for living donors: • Close the gap between the 95 percent of Americans who support organ donation and the 50 percent who are registered donors.

• Invest in clinical research and innovation that could potentially increase the number of transplants by almost 2,000 each year and improve outcomes for transplant recipients.

• Facilitate breakthrough donation-related research and development with almost $200 million in investments.

Dozens of companies, foundations, universities, hospitals and donation advocacy organizations are on board. Among them is the United Network for Organ Sharing, which manages the nation’s transplant system. UNOS also developed and maintains UNet, a network of technology applications used by all transplant

centers, organ procurement organizations and transplant histocompatibility labs nationwide to ease the transplant process and produce successful donation outcomes.

At the White House Organ Summit, leaders from UNOS announced plans to implement new technology and data tools to increase the number of transplants done in the United States. Its initiatives will use UNet data and applications to help transplant professionals recover and use more organs more efficiently, according to UNOS CEO Brian Shepard. “UNOS touches every organ transplant done in the United States,” Shepard said.

“These technology initiatives will speed the matching process and support the work of hospitals and OPOs to get transplants to more patients.”

UNOS Initiatives

Richmond, Va.-based UNOS plans to take several actions by the end of 2016 to boost organ transplants in the United States: • Complete TransNet, an innovative technology platform that helps ensure that donated organs are matched correctly and efficiently with identified recipients.

• Implement electronic data exchange capabilities to expedite delivery of critical and time-sensitive information among OPOs, transplant centers, histocompatibility labs and UNOS. • Start a pilot project for transplant centers to develop donor profiles for their candidates.

• Provide transplant centers with quarterly benchmark reports they can use as performance improvement tools.

UNOS also plans to conduct studies on modifying existing transplant center performance monitoring and assessing best practices to increase the use of moderate- to high-risk kidneys.

About 83 percent of the people on the national transplant waiting list need kidneys. That number is slightly higher in Illinois (85 percent) and markedly higher in Indiana (93 percent).

UNOS will also work with researchers at the Oregon Health and Sciences University, the University of California San Francisco and several organ procurement organizations around the country to launch the Donor Management Research Institute to make more transplantable organs available and enhance donation outcomes.

Visit the White House’s website (bit.ly/2cJCJPS) to watch a taped video of the White House Organ Summit.

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Cook County Names New Chief Medical Examiner The positive relationship Gift of Hope has enjoyed with the Cook County Medical Examiner’s office in recent years is expected to continue with a new CCME at the helm of this nowcelebrated office. On July 13, the Cook County Board of Commissioners appointed Ponni Arunkumar, MD, as Chief Medical Examiner of Cook County. She replaces Stephen Cina, MD, who had served as CCME since 2012.

“Gift of Hope has had a strong and successful relationship with the Cook County Medical Examiner’s office, which is an extremely important link to saving and enhancing lives not only in Illinois but across the country,” said Shaun Martin, Gift of Hope’s Manager of Forensic and Tissue Relations. “We are excited to be working with Dr. Arunkumar as the new Chief Medical Examiner. She and her office are strong supporters of donation, and we look forward to continuing our work together to offer hope and life to others through donation.”

Proven Leader

Dr. Arunkumar has been a leader at the CCME’s office for several years and played an instrumental role in the office receiving national accreditation earlier this year, according to Cook County Board President Toni Preckwinkle. “She is committed to the Medical Examiner’s office, its staff, our county and its residents, and I am proud to appoint her as our Chief Medical Examiner,” she said when introducing her as the new CCME in July.

Dr. Arunkumar has a long affiliation with Cook County and the ME’s office. She had been interim chief since June of this year, and before that she had been the Deputy Chief Medical Examiner since September 2012. Previous to that she had served as an Assistant Medical Examiner since 2004.

Shortly after Dr. Cina took over management of the ME’s office in 2012, he vowed that it would regain accreditation from the National Association of Medical Examiners, the national professional organization of physician medical examiners, and made Dr. Arunkumar the point-person during the accreditation process. Earlier this year, the office was awarded full NAME accreditation for the first time since 2011.

Partner in Donation

The CCME’s office handles about 5,500 cases and performs nearly 3,000 autopsies each year. Gift of Hope works with the office to coordinate donation in some of these cases. Under Dr. Cina, a strong donation advocate, donation referrals to Gift of Hope from the ME’s office increased dramatically, and donation refusals dropped markedly.

Dr. Ponni Arunkumar took over as Chief Medical Examiner of Cook County on July 13 after serving as Deputy Chief Medical Examiner since 2012. She replaces Dr. Stephen Cina.

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Dr. Arunkumar said the ME’s office will continue its strong support of donation under her leadership. “The Cook County Medical Examiner’s Office is committed to facilitating organ and tissue donation and working with Gift of Hope,” she said. “I know that because of the work of Gift of Hope, a tragedy for one family means life for another. I will continue to work with Gift of Hope to facilitate donations and heal the living through the work at the Medical Examiner’s office.”

Gift of Hope Expands Latino Community Outreach Jennifer Aguilar and Olman Chaheine joined Gift of Hope in June as Community Outreach Coordinators and will be responsible for developing outreach programs in Latino communities in Gift of Hope’s donation service area. Their goal will be to raise awareness of organ and tissue donation among residents in those areas and increase donor registrations through grassroots public relations and communications programs and special events.

“We have a tremendous opportunity to reach more people in the Latino communities we serve with the important message about embracing organ and tissue donation and becoming registered donors,” said Marion Shuck, Gift of Hope’s Manager of Community Affairs. “One of our major goals at Gift of Hope is to make the decision to be a registered donor the social norm in the communities we serve. Jennifer and Olman Jennifer Aguilar and bring the experience, skill set and drive Olman Chaheine to help us achieve that goal in our Latino will work to raise awareness of organ communities.” and tissue donation and increase donor registrations in Latino communities in Gift of Hope’s service area.

Two people with proven strengths in planning and executing grassroots community outreach programs and establishing and maintaining key relationships with community stakeholders have joined Gift of Hope’s Community Affairs team to strengthen the organization’s outreach efforts directed at Latinos.

Aguilar joins Gift of Hope after serving as a Marketing Specialist for Nuestro Queso, an award-winning Rosemont, Ill.-based company that manufactures Hispanic cheeses and other dairy products. Chaheine previously served as an Outreach Coordinator for Wyn-Win Communications, a Chicago-based communications and public relations consulting group with special expertise in planning and executing grassroots public awareness and cause advocacy campaigns.

Donation Advocates Unite to ‘Wave Away the Waiting’ Gift of Hope President/CEO Kevin Cmunt and Community Affairs Director Jack Lynch joined Illinois Secretary of State Jesse White in urging the people of Illinois and northwest Indiana to Wave Away the Waiting by registering as organ and tissue donors at an Aug. 3 event held to observe National Minority Donor Awareness Week.

At the event, held on the plaza of the James R. Thompson Center in Chicago, scores of donation advocates and volunteers were on hand to represent the many people who die each year in Illinois waiting for an organ transplant, more than half of whom are minorities. Also on hand to share their stories were several people currently waiting for lifesaving transplants.

“It is time we work together and end the wait for those in need of organs,” White said. “Minorities are in great need for organ transplants, so I encourage everyone to register to become a donor and offer the gift of life to someone in need.”

National Minority Donor Awareness Week, which runs Aug. 1 – 7 each year, is a nationwide observance that aims to educate minorities of the critical need for organ, eye and tissue

donors within multicultural communities. It encourages people from all racial and ethnic groups to become donors by registering in their state donor registries and draws special attention to minorities, who make up the majority of the 120,000 men, women and children currently on the national organ transplant waiting list.

Nationally, about 57 percent of the people on the waiting list for organ transplants belong to minority groups. In Illinois, that figure is much higher — about 65 percent.

To learn more about minorities and donation and what you can do to Wave Away the Waiting, visit the African-American Task Force section of GiftofHope.org and the National Minority Donor Awareness Week section of Organdonor.gov.

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Greatest Gift in the World Gives Young Boy Second Chance at Life Seven-year-old EJ Maldonado, shown with father Efrain, twin sister Madeleine and mother Rachel, celebrates two birthdays every year. One is the day he was born; the other is the day he received his liver transplant.

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EJ Maldonado’s Story is the Centerpiece of an Awareness Campaign Aimed at Latinos

On Aug. 1, 2011, just two weeks before his second birthday, EJ Maldonado and his family received the greatest gift in the world when an organ donor gave the Plainfield, Ill., boy a healthy new liver to replace his failing one.

Unfortunately, the only treatment option is major surgery that reroutes bile flow using a loop of intestine. But even that isn’t 100 percent successful. In fact, in 15 percent to 40 percent of patients, the procedure doesn’t work. For them, liver transplantation is the final option.

On Aug. 1 of this year, the fifth anniversary of EJ’s liver transplant surgery, Gift of Hope unveiled its Greatest Gift in the World campaign at Chicago’s Northwestern Memorial Hospital with EJ, his family and his transplant surgeons center stage.

That was EJ’s situation.

And the timing couldn’t have been better. The launch of Gift of Hope’s first Spanish-language donation education and awareness campaign coincided with the start of National Minority Donor Awareness Week.

And, although the campaign’s message is a serious one, the kickoff event was festive, marked with colorful balloons and a rousing rendition of “Happy Birthday” sung in EJ’s honor.

The multimedia Greatest Gift in the World campaign tells EJ’s poignant story as he endured several major life-prolonging surgeries, eventually culminating in a liver transplant that saved his life and let him grow up like any other little boy.

“Of the nearly 5,000 people on the organ transplant waiting list in Illinois, 63 percent are minorities,” Gift of Hope President/CEO Kevin Cmunt told those assembled at the kickoff event. “Almost 1,000 of them are Latinos like EJ. This month, as we work to raise awareness about the urgent need for organ and tissue donation among minorities, we launch the Greatest Gift in the World campaign to invite Latinos to make the decision to be organ donors and help those who need it.”

Scary Start in Life Shortly after EJ and his twin sister Madeleine were born in 2009, Rachel and Efrain Maldonado’s elation turned to fear when they learned their tiny son had a rare disorder of the liver and bile ducts called biliary atresia. His first two years became a whirlwind of doctor appointments, hospital stays and surgeries. “When we got the news he was sick, we were scared,” Efrain said.

The potentially deadly condition, which blocks bile flow from the liver to the gallbladder, affects about one in 20,000 babies in the United States. Once trapped inside the liver, bile quickly damages and scars liver cells. That eventually leads to liver failure.

Babies with biliary atresia usually appear healthy when they are born. Symptoms such as jaundice, dark urine, weight loss and irritability don’t show up until a baby is several weeks old.

EJ’s liver transplant saved his life and gave him the opportunity to grow up like any other little boy his age.

“It was heartbreaking when the doctors told us we had to put EJ on the transplant waiting list,” Rachel said.

“Otherwise, his chances of surviving were small. We were in anguish seeing how EJ’s health was deteriorating.”

EJ joined the list in April 2011 at number 40 on the list that typically hovers around 400 in Illinois. “It was Good Friday,” Efrain recalled.

Bolstered by the prayers and support of their friends and loved ones, the young family persevered throughout that summer. Then, shortly after midnight on Aug. 1, they got the call they’d been waiting for. A liver was on its way.

“I’ll never forget waiting in the hospital,” said Adilia Garcia, Rachel’s mother. “We saw the men walk through the door carrying a red case, and we knew EJ’s new liver was in it.

A donor saved our grandchild’s life and gave hope to many more people. It was an answer to our prayers.”

The donor who saved EJ’s life that day also saved a second person waiting for a liver transplant. “The donor liver was large, and EJ was very small, so we were able to use a little portion of the liver for EJ,” explained Juan Carlos Caicedo, MD, Director of the Hispanic Transplant Program at Northwestern Memorial, and EJ’s transplant surgeon.

“The remaining portion saved a second person’s life.”

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Closing the Gap Through ongoing education, outreach and awareness initiatives, Gift of Hope works tirelessly to generate a culture that embraces organ and tissue donation and views it as the social norm in all communities in its Illinois and northwest Indiana service area. But it works extra hard to do so in Latino and African-American communities.

That’s because far fewer people from these minority groups donate organs than receive them through lifesaving transplants, largely because of unfounded fears and misconceptions they have about donation. Access to health care and other social, economic and regulatory issues affecting minorities also contribute to the disparity.

The Greatest Gift in the World campaign aims to close that gap by telling EJ’s story in TV, radio, print and mobile messages that pull at the heartstrings of everyone who sees or hears them, but Latinos in particular.

“The campaign demonstrates how fragile life is and the consequences that our loved ones could face because there simply aren’t enough donors to meet the demand for lifesaving transplants,” Cmunt said. “We encourage everyone to talk to your family and tell them you want to save lives by being an organ and tissue donor. It’s an opportunity for all of us to shine our lights and leave a legacy because together we can make a big difference in the lives of others.”

As a doctor who is also a Latino, Dr. Juan Carlos Caicedo, EJ’s transplant surgeon, tells Latinos not to be afraid to register as organ and tissue donors.

EJ’s grandparents said the gift of life EJ received from a selfless donor was an answer to their prayers.

“At that moment, we knew he had a second chance at life,” Efrain added.

Today, the energetic second-grader is like any other sevenyear-old. He goes to school, plays sports, takes summer vacations and loves to celebrate his birthday.

He and his twin sister Madeleine share an Aug. 15 birthday with parties, presents, family and friends. But every year, two weeks before their joint celebration, EJ and his family spend his “liver birthday” quietly, reflecting on the selfless organ donor who made it all possible.

Rachel calls EJ’s donor their “angel,” and before the day is over they send balloons up to heaven as a thank-you and remembrance.

“That was Madeleine’s idea,” Rachel explained. “We’ll be forever grateful to our angel for giving our son the greatest gift of all, the gift of life.”

“An organ donor leaves a great legacy of life and hope,” Dr. Caicedo added. “As a doctor who is also a Latino, I tell my Latino community not to be afraid to register to become organ and tissue donors. I see many cases in which our families are consumed by fear of the unknown. Don’t be afraid. If we all come together as a unified family as all Latinos are, we can help raise the public consciousness about the importance of organ and tissue donation and about giving the greatest gift in the world.”

Second Chance at Life Because EJ spent so much time in bed while he was in and out of the hospital before his transplant surgery, he never learned to walk. He didn’t talk much either. That all changed after he received his liver. “When he opened his little eyes, EJ called me ‘Mommy’ for the very first time in his life,” Rachel recalled.

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The Greatest Gift in the World ad campaign tells EJ’s story of enduring several major lifesaving surgeries before receiving a liver transplant that saved his life.

Gift of Hope Brings Nucleic Acid Testing In House

“Viruses are really small, so you may not be able to identify them by serological methods alone,” explained John Lunz, PhD, Director of Gift of Hope’s Histocompatibility and Immunogenetics Laboratory.

Serological tests are blood tests that look for proteins called antibodies. They are conducted on all potential donors Gift of Hope works with. When a virus enters the body, the immune system responds by making antibodies. But that doesn’t happen overnight. In fact, it can take weeks or months for antibodies to appear in the blood. That means someone can be infected with a virus weeks before a traditional serological test can detect it.

“NAT is so sensitive that it can detect a virus in a matter of days after infection,” said Martin Jendrisak, MD, FACS, Gift of Hope’s Medical Director and Vice President of Research and Development. “If an antibody test is negative but the NAT screen is positive, it shows recent infection.”

Because NAT offers genetic-level accuracy, it virtually eliminates the possibility of transmitting a deadly virus from an infected donor to a healthy recipient. And by doing so it can expand the pool of potential donors and has the potential to save more lives because more transplantable organs are available.

People who once were excluded due to “high-risk” circumstances such as incarceration or multiple blood transfusions can now be considered for donation if NAT results are negative. Best of all, test results are available within a matter of four to five hours. That saves precious time, which is critical to maintain the health and viability of potential donor organs.

Between 2008 and 2012, Gift of Hope performed NAT onsite in its full-service laboratory. Testing during that time was more cumbersome than it is today, and results were less reliable. So in 2013 Gift of Hope began outsourcing NAT to area blood banks.

TEST’S EFFICIENCY, ACCURACY CAN BOOST TRANSPLANTABLE ORGAN NUMBERS Transmission of disease through organ transplantation is extremely rare thanks to sophisticated tests that look for the presence of dangerous viruses and infections in potential donors.

One such test, nucleic acid testing, or NAT, is highly sensitive and screens for the most harmful viruses, including HIV, hepatitis B and C, and West Nile. NAT was introduced in 2001, but it didn’t gain widespread use until 2011 when the Centers for Disease Control and Prevention issued guidelines recommending that all organ donors be screened for harmful viruses using this extremely accurate, gene-based test.

One by one, however, those facilities began dropping infectious disease screening from their roster of services. That left Gift of Hope searching for new sources located farther and farther away from its donation service area. Faced with having to send blood samples to these distant testing centers and dealing with the prospect of losing potentially transplantable organs as a result, Gift of Hope decided to purchase new testing equipment and bring NAT back in house.

“It became a matter of necessity,” Lunz said. “Donor organs become available at any time of the day or night, so NAT must be available around the clock. Because our lab already operates on a 24/7 basis, adding NAT made perfect sense. With the addition of NAT, we’ve truly become a regional organ procurement organization infectious disease lab.”

In addition to using NAT to screen donors within its own service area, Gift of Hope now performs NAT for three organ procurement organizations in Wisconsin and Iowa and for a national blood bank in Minnesota. To date, Gift of Hope’s laboratory has used NAT to screen nearly 1,000 donors since it brought the service in house in July.

“Our lab now serves as a model of how things can and should be done,” Dr. Jendrisak said.

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Local Athletes Triumph at 2016 Transplant Games TEAM ILLINOIS WINS 75 MEDALS AT BIENNIAL EVENT

Diagnosed with heart disease when he was 16, Jason Barishman received a heart transplant in 1995 when he was 22 years old. Since then, the Skokie, Ill., resident has fathered three children, celebrated his 20th wedding anniversary and participated five times in the annual Donate Life Transplant Games of America, including the 2016 TGA held June 10 – 16 in Cleveland.

That’s not to say life’s been all rosy for him. About two years ago, Barishman’s body started to reject his donated heart, and he began to struggle with life-threatening episodes, which continue today. But that made participating in the 2016 TGA extra special for him, and he made the most out of his experience by designing the Team Illinois trading pin and winning gold medals in bocce and doubles corn hole.

“All of this was made possible because of a family’s willingness to share their son’s wish and donate his organs during their time of loss,” said Barishman, one of more than 150 Team Illinois members who took part in the 2016 edition of the TGA. Terrence Vargas and his wife Mindi were among them.

They competed in ballroom dancing and came home with four gold medals in the intermediate and advanced Terrence Vargas (left) categories for donated a kidney to his sister Judy in 2013. He swing/rumba and and his wife Mindi won tango/waltz. “We four gold medals in various were as surprised dance competitions at the Transplant Games. as anyone,” said Terrence Vargas, who donated a kidney to his sister in 2013. “Mindi and I hadn’t danced in years before going to Cleveland. What an amazing experience to bring home the first gold for Team Illinois at this year’s event.”

Terrence’s two sisters, Betty and Judy, were also part of Team Illinois and competed in bowling. They didn’t win any

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Team Illinois had a record-breaking week at the 2016 Transplant Games of America, winning 75 medals during the competition held June 10 – 16 in Cleveland.

medals, but they were happy to cheer on their brother, who is a hero in the eyes of many Team Illinois members for being a living donor for his sister.

Terrence and Mindi Vargas’ triumph set the tone for a record-breaking week for Team Illinois, which won 75 medals during the seven-day competition. The team comprised 53 talented athletes, including 11 living donors, 34 organ transplant recipients, one tissue transplant recipient and two cornea transplant recipients.

Also part of the group were 11 transplant recipients from Australia, who joined Team Illinois because international teams do not participate in the TGA. Through its ongoing work as the organ procurement organization serving most of Illinois, Gift of Hope has touched the lives of many of these people.

That includes Ralph Dahma, a kidney transplant recipient from Lindenhurst, Ill., Susan English, a liver transplant recipient from Darien, Ill., and Debby Ramsey, a kidney transplant recipient from Zion, Ill. This trio, along with Terry Holyoke, a kidney transplant recipient from Australia, surprised themselves at the TGA by winning the gold medal in team trivia.

“It was great fun,” said Dahma, who also competed in team volleyball and track and field. “We had some really tough categories and some real mind-boggling questions, but we all brought something special to the table and came away with a medal.”

Ballroom dancing, bocce, bowling, corn hole, team trivia, volleyball and track and

field were seven of the more than 20 competitive events held at the TGA. Other events included basketball, singles and doubles tennis, darts, badminton, and individual and relay swimming. More than 6,000 people attended the 2016 TGA to celebrate the gift of transplantation and commemorate those who offered the gift of life through donation.

A perennial favorite among transplant recipients and donor families, the TGA began more than two decades ago as a way to get the word out about organ and tissue donation.

Over the years, it has evolved into an uplifting event that brings transplant and donor families together. Most importantly, the TGA show the world that transplantation gives hope and Cornea transplant recipient life to people.

Anthony Diaz, at 14 one of the youngest members of Team Illinois, took part in his first Transplant Games and won four gold medals.

Team Illinois is a 501(c)(3) not-forprofit organization that brings together transplant recipients, living donors, donor families, and their families and friends to promote awareness of the critical need for organ, eye, bone marrow and tissue donations and increase the number of potential donors in the state organ and tissue and bone marrow registries.

“Through participation in the Donate Life Transplant Games of America, we can show the world that transplantation saves and enhances the lives of recipients while commemorating those who selflessly offered the gift of life,” said Leah Gleason, a spokesperson for Team Illinois and mother of liver transplant recipient and TGA athlete Lucie Gleason.

For more information on Team Illinois, visit goteamillinois.org. To learn more about the TGA, go to transplantgamesofamerica.org.

Gift of Hope works in partnership with 183 hospitals and nine transplant centers to meet the ever-growing demand for donor organs and fulfill

HOSPITAL PERFORMANCE* METRICS

the organization’s vision — that every opportunity for organ and tissue donation is successful. Here’s a look at key donation performance metrics for Illinois and northwest Indiana hospitals that have had at least one organ donor during the period noted and the contributions these hospitals are making to offer hope and life to others.

Donation Donation Timely

Organ Conversion Authorization Notification Hospital Donors Rate Rate Rate Adventist La Grange Memorial Hospital

1

25

33

86

Advocate Christ Medical Center

27

61

62

89

Advocate Condell Medical Center

4

67

67

97

Advocate Good Samaritan Hospital

3

50

50

85

Advocate Good Shepherd Hospital

1

50

50

93

Advocate Illinois Masonic Medical Center

1

67

67

90

Advocate Lutheran General Hospital

3

50

56

83

Advocate Sherman Hospital

2

67

67

100

Alexian Brothers Medical Center

4

100

100

97

Blessing Hospital

1

33

33

100

Carle Foundation Hospital

17

85

85

100

Centegra Hospital: McHenry

1

100

100

100

Centegra Hospital: Woodstock

1

100

100

100

Community First Medical Center

2

50

50

100

Community Hospital of Munster

2

100

100

100

Decatur Memorial Hospital

2

67

67

96

Delnor Hospital

2

67

67

85

Edward Hospital

2

60

60

92

Franciscan St. Anthony Health

1

100

100

94

Franciscan St. James Health: Chicago Heights

1

50

50

92

Franciscan St. James Health: Olympia Fields

1

50

50

63

Franciscan St. Margaret Health: Dyer

1

100

100

96

Glenbrook Hospital

2

100

100

87

John H. Stroger Jr. Hospital of Cook County

10

87

93

88

Kishwaukee Community Hospital

1

33

33

86

Little Company of Mary Hospital & Health Care

2

67

67

98

Loyola University Medical Center

11

70

70

96

Memorial Medical Center

5

83

83

99

*Hospitals with at least one organ donor through 7/31/16. Note: Data subject to change due to Gift of Hope’s quality assurance process.

13

Donation Donation Timely

Organ Conversion Authorization Notification Hospital Donors Rate Rate Rate Mercyhealth (Rockford)

11

76

76

97

Methodist Hospital: Northlake

2

80

80

100

Methodist Hospital: Southlake

2

67

67

100

Metro South Medical Center

1

50

100

90

Morris Hospital

2

67

67

100

Mount Sinai Hospital Medical Center

6

42

44

86

Northwest Community Hospital

1

80

80

100

Northwestern Lake Forest Hospital

1

100

100

100

Northwestern Medicine Central DuPage Hospital

8

60

60

90

Northwestern Memorial Hospital

4

36

36

89

Norwegian American Hospital

2

75

75

95

OSF Saint Anthony Medical Center

2

67

67

98

OSF Saint Francis Medical Center

15

53

53

97

OSF St. Joseph Medical Center

1

75

75

96

Presence Resurrection Medical Center

2

67

67

100

Presence Saints Mary and Elizabeth Medical Center

1

100

100

100

Presence St. Francis Hospital

2

80

80

97

Presence St. Joseph Hospital

1

100

100

100

Presence St. Joseph Medical Center

6

56

59

89

Rush University Medical Center

6

63

63

91

Rush-Copley Memorial Hospital

2

80

80

97

Silver Cross Hospital

5

75

75

97

Skokie Hospital

1

33

33

100

St. Alexius Medical Center

1

50

50

95

St. Catherine Hospital

2

67

67

79

St. John’s Hospital

8

57

57

100

St. Mary Medical Center

1

50

50

96

St. Mary’s Hospital

2

83

83

100

Swedish Covenant Hospital

2

80

80

100

Unity Point Health Trinity: Rock Island

2

100

100

89

University of Chicago Medicine

15

69

71

96

University of Illinois Medical Center

6

45

45

96

Vista Medical Center: East

2

60

60

95

West Suburban Medical Center

1

75

75

100

DEFINITIONS

Totals

14

Organ Donors

Donors from whom one or more organs were recovered for the purpose of transplantation. This includes both donation after brain death, or DBD, donors and donation after circulatory death, or DCD, donors.

CONNECTIONS

237 69% 71% 94%

Donation Authorization Rate The rate at which authorization for donation is obtained, expressed as a percentage.

Donation Conversion Rate

The rate at which potential donors are converted to actual donors, expressed as a percentage.

Timely Notification Rate

The rate at which hospitals contact Gift of Hope after a death or within one hour after an individual meets the criteria for imminent death and before the withdrawal of life-sustaining therapies, expressed as a percentage.

STATE OF DONATION 120,011*

4,737*

in the U.S.

in Illinois

1,332* in Indiana

The number of people waiting for heart, liver, kidney, lung, pancreas or small bowel transplants as of July 31, 2016. * Based on data from the Organ Procurement and Transplantation Network

GIFT OF HOPE DONATION ACTIVITY

Organ Donors Organs Transplanted Organs Per Donor Tissue Donors Bone Donors** Heart Valve Donors** Skin Donors* *Through July 31

2016*

2015*

% CHANGE

237 748 3.16 1010 956 105 704

223 630 2.83 1012 838 101 414

6.28% 18.73% 11.66% -0.20% 14.08% 3.96% 70.05%

MAKE A DIFFERENCE! REGISTER TO BE AN ORGAN AND TISSUE DONOR GIFTOFHOPE.ORG

**Subset of Tissue Donors

ILLINOIS ORGAN/TISSUE DONOR REGISTRY

6,054,779 22 58% 300 :10 25

An average of 22 people die each day while waiting for a transplant.

As of July 31, 2016

Of adults (18 or older) in Illinois are registered as organ and tissue donors.

In 2015, more than 300 people registered for transplants in Illinois died while waiting.

Every 10 minutes, a new person is added to the national transplant waiting list.

One donor can save or enhance the lives of more than 25 people.

15

FPO INDICIA TO BE ADDED

BY PRINTER

425 Spring Lake Drive Itasca, IL 60143

To learn more about organ and tissue donation, visit GiftofHope.org

ADDRESS CORRECTION REQUESTED

#6Millinois Social Media Campaign a Success The #6Millinois social media campaign Celebrating Six Million Registered Organ, Eye and Tissue Donors in Illinois conducted throughout August was a resounding success. The campaign generated more than 80,000 impressions as hundreds of donation advocates used social media to share their donation stories.

The #6Millinois campaign showcased stories of people who have registered as donors or who have been touched by donation in some way as donor family members, transplant recipients or waitlist candidates. They shared their stories via social media using the #6Millinois hashtag. The campaign also had its own website (donatelifeillinois.org/#6millinois), which remains live.

Gift of Hope, Eversight Illinois, the Illinois Secretary of State’s Office and Donate Life Illinois collaborated on the campaign to boost donor registrations in Illinois by leveraging a major donor registration accomplishment — the achievement of 6 million donor registrations in the state. The campaign urged even more Illinoisans to increase that number by joining the Illinois Organ/ Tissue Donor Registry.

Although the #6Millinois campaign has ended, you can continue to read the motivational stories people shared by visiting Gift of Hope’s Facebook page (facebook.com/www.giftofhope.org) or by following the campaign’s Facebook feed (bit.ly/2c4HRiQ).

Gift of Hope Garners Multicultural Marketing Award Gift of Hope’s Lasting Legacy campaign is a national award winner. The campaign took top prize in the 2016 Excellence in Multicultural Marketing Awards competition held by the National Association for MultiEthnicity in Communication. The annual NAMIC EMMA competition identifies and honors the best marketing programs and campaigns that target multicultural audiences and embrace diversity.

Gift of Hope conducted its Lasting Legacy campaign in fall 2015 to raise awareness of organ and tissue donation among African-Americans and encourage people in minority communities to register as donors. The campaign

centered on the story of Vicki Olds, who honored the decision of her 18-year-old daughter, Nikki Smith, to be an organ donor. Nikki’s legacy carries on in the four people whose lives she saved as a donor.

“Because of the urgent need for minority organ and tissue donors, campaigns like Lasting Legacy are helping us make organ and tissue donation a social norm in minority communities,” said Jack Lynch, Director of Community Affairs.

Gift of Hope received the 2016 EMMA at the 30th Annual NAMIC Conference held Sept. 20 – 21 in New York.