3q15 connections final

Third Quarter 2015

A Newsletter for Gift of Hope’s Partners and Friends

THIS ISSUE Leap of Faith Summer Filled with Hope Camp “I Am Me” Marcus Burnett Waits

President/CEO J. Kevin Cmunt Director of Communications and Marketing Gregory Alford 630/758-2726 galford@giftofhope.org

IN THIS ISSUE

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4 Leap of Faith

A Summer Filled with Hope

The tragedy that ended a young woman’s life prompted Gift of Hope Organ Recovery Coordinator Blair Matejak to seize the day and set off on a worldwide tour.

The A Summer Filled with Hope fashion show raised funds to benefit Gift of Hope’s Scholarships for Hope program, which supports Hispanic students seeking higher education.

Manager of Communications and Marketing Therese Michels 630/758-2603 tmichels@giftofhope.org Writer/Editor Tony Sullivan 630/758-2721 tsullivan@giftofhope.org Contributors Susan Cochran 630/758-2987 scochran@giftofhope.org Nesha Logan 630/758-2743 nlogan@giftofhope.org

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6 Camp “I Am Me”

The Wait: Marcus Burnett

Several Gift of Hope staff members took part in the annual Illinois Fire Safety Alliance’s Camp “I Am Me” event to help young burn victims have an unforgettable day.

Marcus Burnett, a devoted minister, prays the next phone call may be the one he’s been waiting for: news that a donor kidney is available to help save his life.

Cover:

Gift of Hope has a longstanding history of supporting and conducting medical and donation-related research thanks to the selfless gifts offered by donors and donor family members. Its Research Institute is working with renowned researchers and institutions to develop lifesaving and life-enhancing advances in donor management and medicine.

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.

Raiza Mendoza 630/758-2744 rmendoza@giftofhope.org Veronica Moreno 630/758-2799 vmoreno@giftofhope.org Diane Schmitz 630/758-2741 dschmitz@giftofhope.org Marion Shuck 630/758-2716 mshuck@giftofhope.org

Copyright © 2015. All Rights Reserved.

Wave Away the Waiting Dignitaries, Volunteers Observe National Minority Donor Awareness Week 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. 5 special event to observe National Minority Donor Awareness Week.

At the event, held at 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.

National Minority Donor Awareness Week, which runs Aug. 1 – 7 each year, is a nationwide observance that aims to educate minorities on 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 more than 122,000 men, women and children currently on the national organ transplant waiting list.

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.

Connections - Wave Away the Waiting

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Leap of Faith

Donor Prompts Gift of Hope Staffer to Seize the Day Blair Matejak was happy and content working as an organ recovery coordinator for Gift of Hope in early 2014 when his wife, Lindsey, threw him one of life’s curveballs. “She said she wanted to see the world before settling down to make the normal life decisions of buying a home and starting a family,” Blair recalls. “It was an exciting proposition, but I struggled with the timing of the bold journey and whether to leave the job that I really enjoyed and had only been in for less than a year.”

But that mental struggle ended when his job inspired him to say “yes” to his wife and to the grand adventure of traveling the world. “The mission of Gift of Hope is to save and enhance the lives of as many people as possible through organ and tissue donation,” Blair says. “Sometimes the lives that are enhanced are the lives of people who work for Gift of Hope. For me, this was one of those times.”

As an organ recovery coordinator for Gift of Hope, Blair is called upon to coordinate the process of recovering and placing donor organs to offer hope and life to a person awaiting a lifesaving organ transplant. As an “ORC,” as people in his field are called, he is charged with knowing not only the complete clinical picture of a donor, but also the story of the selfless person who is offering his or her lifesaving gifts.

Although the work of an ORC is never routine, the case of the young woman donor he worked with that inspirational day affected him in an unexpected way. “She had her whole life ahead of her, a bright future,” Blair recalls. “The tragedy that ended her future was now going to give a future to several other people because of her courageous decision to be an organ donor. I realized at that moment how important it is to live in the present because tomorrow is not guaranteed.”

With the decision made, Blair and Lindsey prepared for their trip, researching their desired destinations and talking with people who had been to the locations they wanted to visit or knew someone who had. They not only left their jobs and their families, but also turned in the keys to their apartment.

They were officially homeless.

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Connections - Leap of Faith

But homelessness, as it turned out, is a relative term. Even though Blair and Lindsey didn’t have an official residence, they felt at home in the countries they visited around the world.

During their trek, Blair carried the organ and tissue donation message to 20 countries in nine months. “When language was not a barrier, I loved to ask people throughout the world about their thoughts on organ and tissue donation,” Blair says.

One place where many residents were proud to talk about donation was Cape Town, South Africa. There, the Matejaks visited the Heart of Cape Town Museum, an interactive attraction located within Groote Schuur Hospital, the site where Dr. Christiaan Barnard performed the first successful human-to-human heart transplant in December 1967.

Blair’s journey — and his motivation for taking the leap of faith to travel the world with his wife — was coming full circle.

During their trip, the Matejaks learned lessons about not only other cultures, but their own culture, too. “We saw the United States through the eyes of other nationalities and with the perspective that only standing outside your home and looking at it from a distance can give you,” Blair explains.

Most importantly the pair learned more about themselves.

Lindsey says the trip restored her faith in humanity. “Time and time again we became undeserving recipients of selfless hospitality, friendly curiosity, joyful celebration, timely transportation and valuable advice,” she says.

And that word — selflessness — is at the core of organ and tissue donation, Blair adds. “The selfless gift of the young donor who gave life to others gave me the courage to say yes to living fully in ‘the now’ and embracing the opportunities that I was presented with.”

Blair returned to his former job as an ORC at Gift of Hope this summer. The lessons he learned during his worldwide trek will no doubt continue to help him as he continues his journey with Gift of Hope.

Event Makes Dreams Realities for Latino Students Gift of Hope once again united Chicago’s Hispanic community by hosting the third annual A Summer Filled with Hope fashion show in support of higher education for Latino students. The July 11 event raised funds to benefit the Scholarships for Hope program, which Gift of Hope created in 2013 to provide financial support for Hispanic students while raising public awareness of Gift of Hope and organ and tissue donation.

For the third consecutive year, Chicago Hispanics did not disappoint. Nearly 300 people from the Latino community were present at the National Museum of Mexican Art located in Chicago’s Pilsen neighborhood where an energetic Flamenco performance kicked off the evening. Guests were treated to delicious hors d’oeuvres and cocktails donated by some of Chicago’s top Hispanic restaurants and spirits providers while they placed bids on various silent auction items, all donated by people and organizations from the Hispanic community.

Fashion models from Chicago, Latin America and other countries donated their time and talent for a runway fashion show that featured the 2015 summer swimwear line designed

by Eva by Evelyn Swimwear founder Evelyn Amador.

young Latino students due to financial constraints,” she explains. “A Summer Filled with Hope involves Hispanic entrepreneurs, the corporate community and local media to set examples for young Latinos that dreams and goals are attainable through education, hard work and dedication.”

Rocio Zavala, daughter of a two-time kidney transplant recipient and a Scholarships for Hope beneficiary who is pursuing an English degree and writer’s certificate from Iowa State University’s renowned Writers’ Workshop, delivered a poignant message.

“At the end of the day, organ donation is not only about giving one person life, but about giving life to all of those who have been struggling along with that person ,” Zavala says. “It is about giving life to the parents of a sick child, the spouse or the partner who stuck with them day and night through every doctor visit and every surgery. It is about the children who had

Raiza Mendoza, Manager of Hispanic Affairs at Gift of Hope, Yenia Herrera, founder and host of Chicago Latino TV, and Amador produced the inaugural A Summer Filled with Hope in 2013. They were inspired by the desire to help build a brighter future for the Latino community through the power of education. Seven scholarships were awarded the first year, and a remarkable 28 scholarships were awarded in 2014. This year, the Scholarships for Hope program will make more than 30 financial gifts to promising Latino students thanks in large part to funds raised at the A Summer Filled with Hope event.

Scholarships range from $250 to $2,000 and may be used for formal education as well as diverse areas such as soccer, acting, modeling, broadcast journalism and cosmetology.

Gift of Hope President/CEO Kevin Cmunt calls the A Summer Filled with Hope event one of his favorite outreach events because it showcases the generosity of the Latino community in supporting future generations.

“This event is truly one of my favorites because we get to see firsthand how tremendously generous the Latino community is,” says Kevin Cmunt, President/CEO of Gift of Hope. “The event also acknowledges the impact we all can have on the future of our communities through helping one another.”

to see their parents struggle with being sick or taking care of the sick while still trying to be good and loving parents. This one act of human kindness — donation — changes the lives not only of those who are directly receiving an organ, but of everyone who is part of that person’s life.”

Many Latino students face the difficult choice between continuing their educations or working to help support their loved ones, according to Mendoza. “Attending a four-year college or university seems beyond the realm of possibility for many

Gift of Hope recognizes the generosity of the Hispanic community, Chicago’s Hispanic media, and people like Amador and Herrera for helping to make A Summer Filled with Hope fun, memorable and tremendously successful.

Connections - Scholarships for Hope

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Gift of Hope Staff See Tissue Donation Outcomes in Action Carnival day at Camp “I Am Me” was a big deal for the nearly 100 campers attending the 2015 edition of this annual event for children who have experienced severe burn injuries. Campers poured into the green field with looks of amazement as they viewed the face painters, fire trucks and cotton candy stand awaiting their arrival.

The smiling faces of volunteers — including several Gift of Hope staff members from Tissue Recovery Services and the Donor Resource Center — greeted the campers at game tents to help these eager children have an unforgettable day. Children of various backgrounds attended this week-long camp held June 21 – 27 at YMCA Camp Duncan in Ingleside, Ill., to share their common experience as burn survivors.

“But you couldn’t tell they’d gone through such trauma,” says Ronald Lynch, Clinical Supervisor of Tissue Recovery Services at Gift of Hope. “They laughed and played just like normal children. Many of the campers were recipients of skin tissue that we recovered. It was great to see our work in action.”

Some may consider the gift of tissue donation life-enhancing, but for these children tissue donation is lifesaving because it gives them a chance to live the lives they really want, Lynch adds. “What really stood out to me were the adults who attended the camp as children and came back to volunteer.

It was a true testament to the idea of paying it forward.”

Joining Lynch at the event were six other Gift of Hope staff members: Candy Huddleston, Tissue Recovery Technician; Gift of Hope Tissue Recovery Services staff volunteer Chasity Dodd, their time each year to help burn survivors enjoy the Forensic Liaison; week-long Camp “I Am Me” experience.

Irvina ScottHarvey, Tissue Recovery Technician; Kathy Benefield, Tissue Recovery Technician; and Kate Ayers and Ricardo Aquino, both Donor Resource Coordinators.

Camp “I Am Me” is coordinated each year by the Illinois Fire Safety Alliance. The camp is designed to provide a safe environment for children who have experienced significant burn injuries to share their common experience while being able to play and build self-esteem as they enjoy the varied activities that make up their camp experience.

Donor Reference Manual Available for Hospital Professionals Gift of Hope has revised and updated the Donor Reference Manual it makes available to hospital professionals to inform and educate them about the donation process and their specific roles in producing successful donation outcomes. Gift of Hope’s Donation Coordinators began distributing the manual to hospital nursing and clinical staff in late August.

• The specifics of donor management • Tissue recovery, reconstruction and uses • Protocols, laws and regulations governing donation

The Donor Reference Manual serves as a ready reference for nursing and clinical staff to get answers to questions they may have about organ and tissue donation and the donation process.

The manual covers such areas as:

The manual is available in two formats — as a three-ring binder to store on hospital units and as a searchable electronic document available for downloading from the Hospital Professionals section of GiftofHope.org.

• The donor referral process • How and when to talk with families about donation • First-person authorization • The specifics of donor authorization • How to work with coroners and medical examiners

For more information on the Donor Reference Manual and to obtain one for your unit, contact the Gift of Hope Donation Coordinator serving your hospital. For the name and contact information of your Donation Coordinator, visit the Hospital Professionals section of GiftofHope.org.

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Connections - Donation News

Make Plans to Attend Hospital Professionals Seminar Hospital professionals from Gift of Hope’s Illinois and northwest Indiana service area are invited to attend From Tragedy to Hope: Rewriting the Story, the organization’s annual continuing education seminar on organ and tissue donation. The free, half-day seminar will be held from 8 a.m. – 1:30 p.m. Thursday, Oct. 29, at Gift of Hope’s headquarters in Itasca, Ill. Hospital professionals can earn CEUs by attending.

“This year’s seminar will tell the start-to-finish story of the organ and tissue donation and transplantation process and will underscore the critical roles that hospital professionals play in writing — and sometimes rewriting — the donation story to help honor the donation decision and transform tragedy into hope,” says Kathleen Abhalter, Regional Manager of Hospital Development at Gift of Hope.

A group of donation and transplantation experts will lead seminar participants through the organ and tissue donation and transplantation process chapter by chapter, from waitlist registration at a transplant center through donor authorization and organ placement.

Seminar speakers and topics include: • Michelle Martin, Transplant Administrator at Advocate Christ Medical Center: working with transplant candidates to get them placed on the transplant waiting list.

• James Doherty, MD, MPH, FACS, Director of Trauma Surgery and Critical Care Programs at Advocate Christ Medical Center: patient/donor management.

• Jamie Williams, RN, CCRN, Surgical Neurological Intensive Care Unit Nurse at Advocate Christ Medical Center: the

nurse’s role in working with Gift of Hope.

• Jeff Kreis, RN, Supervisor of Organ Recovery Services at Gift of Hope: donor management expectations.

• Stefanie Dziedzic, Donation Supervisor at Gift of Hope: the donor authorization process.

• Kathy Cooke, Supervisor of Allocation and Perfusion Services at Gift of Hope: organ placement.

Complementing these clinical talks will be human interest presentations by two main characters in the donation story — a donor family representative and a transplant recipient.

Gift of Hope’s Hospital Development team will distribute einvitations to hospital professionals in early September. Online registration will open at that time. In the meantime, save the date for the event. Contact the Gift of Hope Donation Coordinator serving your hospital or call Gift of Hope’s Education Hotline at 630/930-5878 for more information. And be sure to visit the Hospital Professionals section of GiftofHope.org regularly to stay abreast of organ and tissue donation topics of interest to hospital professionals.

Schmitz Named Volunteer and Special Events Supervisor Diane Schmitz has been named Volunteer and Special Events Supervisor at Gift of Hope, a new position for the organization, and began her duties in that role on June 28. In her new position, Schmitz, who served as Gift of Hope’s Donor Family Services Coordinator for eight years, will lead the organization’s efforts to grow the number of Advocates for Hope volunteers who offer and provide gifts of time and talent to Gift of Hope.

She will also help stage major Gift of Hope events and will supervise the person who fills her previous position.

“The journey of donation and transplantation is a tremendously emotional and humbling one,” Schmitz says. “For eight years, I’ve been blessed to be a member of the Gift of Hope family,

witnessing the compassion and love people have for one another, and I am privileged and honored to retain that connection in my new position.”

Diane Schmitz Before joining Gift of Hope as DoVolunteer and Special nor Family Services Coordinator in Events Supervisor 2007, Schmitz held positions at Giant Steps Illinois in Lisle, Ill., and Resurrection Behavioral Health in Chicago. She holds a dual bachelor of arts degree in psychology and English from the University of Illinois at Chicago and a master of arts degree in industrial organizational psychology from Roosevelt University in Chicago.

Connections - Donation News

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Organ and tissue donors and donor families that Gift of Hope is privileged to work with are positively impacting thousands of lives through the lifesaving and lifeenhancing gifts they offer for transplantation. But many are also benefiting through the gifts they offer for donation-related and medical research.

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Connections - Research Institute

Gift of Hope is among the leading research organ procurement organizations (OPOs) in the nation with a longstanding history of supporting and conducting medical and donationrelated studies. Under the umbrella of its Research Institute, Gift of Hope partners with researchers at some of the most prestigious learning institutions in the world. As a result, Gift of Hope and the donors and donor families it works with are contributing to the development of lifesaving and life-enhancing advances in donor management and medicine.

Gift of Hope’s Research Institute is also home to a renowned and long-established Histocompatibility and Immunogenetics Laboratory. Donor-related studies conducted there are transforming and significantly improving the donation process and enhancing donation outcomes. That translates into saving people’s lives.

“Every donation is a precious gift that offers new promise,” says Gift of Hope President/CEO Kevin Cmunt. “But those who donate to research leave a lasting legacy by saving countless lives through medical advancements that might not otherwise be possible but for the selfless gifts they offer.

At Gift of Hope, we are honored to facilitate that process.”

Honoring the Donation Decision In the same way that organs and tissue are recovered after authorization by individuals or family members, donor tissue — which includes organ tissue as well as bones, tendons, skin and other structural tissue — can be used for research only with the expressed authorization of the donor, the donor family or another person or entity with the legal authority to make that decision.

“The process by which donor tissue is used for research involves the same compassion and consideration afforded to families who have decided to donate their loved one’s organs or tissue for transplant,” Cmunt says. “Only after every possible avenue for transplantation is exhausted will an organ be considered for research. And when a donor’s tissue is recovered and used for research, we contact the family to let them know about the positive impact their loved one’s donation has the potential to make.”

Gift of Hope uses a strict selection process in approving medical researchers and the studies they propose to conduct.

The Institute’s Scientific Advisory Committee, which consists of physicians, PhDs and donor family representatives, evaluates all proposed research that would be conducted through the Research Institute with the most important criteria being efficacy — will the research have a significant, positive impact and will it further the field of study.

Gift of Hope launched the Research Institute in late 2013 in response to the ever-increasing interest of medical researchers in the Chicago-area medical and transplantation communities to collaborate on studies designed to advance donor

management and the medical field in general. Ronald Skolek, Director of Hospital Development at Gift of Hope, helped to get the Institute off the ground and served as the Institute’s gatekeeper, working under the direction of Martin Jendrisak, MD, FACS, Gift of Hope’s Medical Director and Vice President of Research and Development. Together, they established and maintained research policy, reviewed research requests and vetted proposed studies through the Scientific Advisory Committee. Skolek then monitored approved projects to ensure they remained active and on track to achieve their desired goals.

Today, the Research Institute is guided by Gift of Hope’s leadership team of medical and clinical experts who have made significant contributions in their own right. Dr. Jendrisak oversees all research activities, including lab testing advancements, donor management enhancements and relationship manageMartin Jendrisak, MD, Medical Director ment with universities, and Vice President of Research and transplant programs Development at Gift of Hope and fellowship programs conducting research. He works in tandem with Andrés Jaramillo, PhD, Director of Gift of Hope’s Histocompatibility and Immunogenetics Laboratory.

Working together, Drs. Jaramillo and Jendrisak have overseen many groundbreaking, research-based activities that have transformed the donor management landscape in various areas. “These medical and clinical leaders champion impactful donor-related studies that benefit the donation and transplant fields,” Cmunt says.

Research performed through Gift of Hope’s Research Institute falls into three categories: internal research, external research and Gift of Hope-funded research.

Internal Research An example of Gift of Hope’s internal research efforts is the “tissue bio-repository” the organization has established.

Originally created to comply with guidelines established by the United Network of Organ Sharing, the tissue bio-repository has collected tissue samples from donors and recipients over the last 25 years. These resources have proven to be highly useful in developing tools and screening kits used to match donor and recipient tissue to increase the likelihood of successful transplants. The samples have also been used in many clinical studies that have dramatically improved the donation process and transplant outcomes.

Connections - Research Institute

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Gift of Hope’s Research Institute Partners Gift of Hope’s Research Institute is collaborating with researchers at many prestigious learning institutions across the country and around the world. Here are a few of them: • Beth Israel-Deaconess Medical Center • Columbia University • Harvard School of Public Health • Johns Hopkins University Bloomberg School of Public Health • Loyola University Chicago Stritch School of Medicine • Mount Sinai School of Medicine • Northwestern University Feinberg School of Medicine • RIKEN Center for Genomic Medicine (Japan) • Rush University Medical Center • Stanford University • Universite Catholique de Louvain (Belgium) • University of Chicago Medicine • University of Florida • University of Illinois • University of Michigan Medical School • University of Minnesota • University of Wisconsin-Madison • Vanderbilt University • Wellcome Trust Sanger Institute (Cambridge, UK)

One such example involves the cross-matching process used to determine whether a recipient will reject a donor organ or tissue. Until recently, cross-matching was performed using a long-established technique that was time-consuming and sometimes inaccurate. Thanks to a collaborative study conducted through Gift of Hope’s Research Institute and the introduction of new technology by Dr. Jaramillo and his laboratory team, Gift of Hope now uses a virtual cross-matching process that is significantly faster and infinitely more accurate. And it is sharing this advancement with other OPOs around the country so they can benefit from Gift of Hope’s work.

“This really improves the opportunity for every patient to truly get a chance to receive an organ,” Dr. Jendrisak says. He points out that additional research is under way using tissue from the bio-repository to enhance the cross-matching process.

“We are in a unique position to do this work,” he says. “Access to the clinical lab and the bio-repository keeps our organization at the forefront of this research.”

Another study recently completed and published by Dr. Jendrisak and several other clinicians at Gift of Hope addressed the feasibility and cost-effectiveness of performing fiber optic bronchoscopy to increase the likelihood of successful lung transplants. The procedure allows clinicians and transplant surgeons to examine potential donor lungs from remote locations. The donor is in one location, and the transplant surgeon is in another. The transplant surgeon views the FOB video images online to make his or her assessment of the tissue viability and a decision on whether he or she will accept the organ for transplantation.

The study proved that, when FOB is performed by trained OPO staff members like those at Gift of Hope, it can speed the process of determining the viability of donor lungs and improve the likelihood of successful lung transplants.

External Research While Gift of Hope clinicians have improved the donation process and transplant outcomes through Research Institute activities conducted within Gift of Hope’s walls, outside researchers at some of the most prestigious learning institutions in the nation and the world (see sidebar at left) have relied on — and continue to rely on — donor tissue made available through the Research Institute to conduct clinical studies in important research areas. Working in collaboration with researchers at these institutions, the Research Institute has contributed to dozens of articles, novel treatments, medications and lifesaving clinical trials. “None of this would be possible without the generosity of donors and their families who have helped support Gift of Hope’s research efforts,” Dr. Jendrisak says.

One such outside researcher is Susanna Chubinskaya, PhD, Professor of Biochemistry at Rush University in Chicago. Working with Dr. Jendrisak, Dr. Chubinskaya created Rush University’s Bone and Tendon Repository, which has provided tissue for research studies performed across the globe. These studies have significantly improved orthopedic surgery techniques, produced potential medications to treat rheumatoid arthritis and helped the medical community gain a better understanding of how lupus impacts the joint system.

Another researcher, Julian Solway, MD, a pulmonologist and Vice Chair for Research at University of Chicago Medicine, has relied on donor tissue from Gift of Hope’s Research Institute and Dr. Chubinskaya’s Bone and Tendon Repository to conduct studies with colleagues at leading medical schools on new treatments for asthma and other pulmonary conditions.

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Connections - Research Institute

Yet another researcher, Minoli Perera, PhD, Assistant Professor of Medicine at University of Chicago Medicine, used recovered donor liver tissue provided by the

Research Institute to support a study examining the relationship between two genetic markers and dosages of Warfarin, a commonly prescribed blood thinner, for African-Americans. Finding the correct dosage of this drug has challenged cardiologists since its introduction. This breakthrough study is offering new promise in enhancing Warfarin therapy in African-American patients.

Tissue for Optimal Research Still other researchers are using Research Institute-provided donor tissue to study and develop new medications and therapies, one of which, now in clinical trials, aims to treat rare conditions in neonatal patients that heretofore have been untreatable. In addition to these studies, Gift of Hope’s Research Institute is supporting more than 15 others (see table below for a few of them).

What makes the relationship between Gift of Hope and these researchers so special and valuable is the ability to use human tissue for studies, according to Dr. Chubinskaya. “In the past, researchers only had access to non-human tissue, which does not mimic the human body in how it behaves and reacts to stimuli,” she says. “Researchers have primarily used animal tissue to conduct research. However, human tissue has a different structure that animal tissue cannot replicate. By using human tissue for modeling and subsequent testing, we can more accurately understand the joints and develop more efficient treatments that include therapies and medicines.”

Gift of Hope-Funded Research Gift of Hope also administers a research and donation fund, originally established by the Illinois Transplant Society and funded by the transplant centers that Gift of Hope works with to produce successful transplant outcomes. Gift of Hope evaluates research grant applications and distributes about $50,000 in funding each year to support research projects.

Among the currently active Gift of Hope-funded projects are a study that is examining the impact of exercise and physical rehabilitation on kidney transplant recipients and an evaluation of public- and private-sector opinion on organ and tissue donation and how it can be shaped to increase donor authorizations by individuals and donor families. The Research Institute’s Scientific Advisory Committee evaluates all grant applications to ensure that the studies support and advance Gift of Hope’s mission and the ultimate goal of meeting Gift of Hope’s vision — that every opportunity for organ and tissue donation is successful — and honor the decision of individuals and donor family members to donate organs and tissue for research.

“Donors and donor families have made some of the most important contributions to medical advancements by agreeing to donate their own or their loved one’s organs and tissue for critical research,” says Cmunt. “We are honored to help them and their loved ones leave a lasting legacy through the gifts they offer.”

Active Gift of Hope Research Institute Studies Study Title

Purpose

Lung Tissue Repository

Lung

Heart

Develop Competencies for Isolating Human Islet Cells for Eventual Transplantation

Evaluate the molecular and physiological mechanisms that cause a range of lung diseases, including asthma, COPD and cystic fibrosis, with the ultimate goal of preventing these diseases.

Identify the pivotal role of a specific enzyme that helps lead to atrial fibrillation in aged atria, which will be used to understand how cardiovascular disease impacts older patients differently than younger patients.

Test the hypothesis that islet transplantation in patients with established kidney transplants leads to a reduced risk of diabetes-related complications.

Pancreas and Islet Repository

Study the efficacy of islet cell transplantation to treat Type 1 diabetes.

Pancreatic-islet cells

Protection Against Oxidative Stress in Islet Isolation

Better understand islet isolation techniques for transplantation.

Pancreatic-islet cells

Isolation of Human Facilitating Cells from Deceased Donor Bone Marrow

Develop methods to identify people who may not need immunosuppressive agents to prevent rejection of transplanted organs, thus eliminating the lifelong expense associated with taking antirejection medications.

Vertebrae

Studies of Pediatric Angiogenesis

Compare normal lymphatic tissues to lymphatic malformations to better understand the origins of vascular anomalies that develop in utero or shortly after birth.

Lymph Node

Bone and Joint Tissue Repository

Evaluate the physiological structure of the joint system, how load and injury lead to osteoarthritis and other orthopedic conditions, and develop new treatments and medications for rheumatoid arthritis and other conditions.

Various Joints

JNK Suppression of Connexin 43 Enhances A-fib in Aged Atria

Tissue Type

Pancreatic-islet cells

The Wait: Devoted Minister Hopes for Answer to His Prayers Twice in the last seven years, Marcus Burnett has found himself on the organ transplant waiting list. The first time he was in search of a new heart to replace his failing one, which had been ravaged by hereditary cardiomyopathy. That was in February 2008. His prayers were quickly answered when a donor heart was located, and Marcus underwent a lifesaving transplant just a day-anda-half after his name was added to the list.

Grateful for a second chance at life, Marcus hoped his health worries were behind him. But the strict immunosuppressant treatment plan following his transplant took its toll, and just four short years later, he was added to the waiting list again, this time for a kidney. The second time around, the wait has seemed endless.

“We knew I would experience some kidney damage,” the 62-year-old husband, father of three and grandfather of five explains. “We just didn’t think it would happen so soon. I keep praying for the call.”

Of the 5,200 people currently waiting for an organ transplant in Illinois, nearly 4,500 of them — about 86 percent — need a lifesaving kidney transplant. The average wait for a kidney is about 3.5 years, but many on the list wait longer.

Marcus was added to the kidney transplant waiting list at Northwestern Memorial Hospital in September 2012, and in July of this year he joined the list at Froedtert Hospital in Milwaukee.

By putting his name on both lists, Marcus hopes his waiting time will be shortened.

A year ago, he began dialysis treatments near his home in Waukegan, Ill. Three days a week, Marcus is hooked up to a machine that does the work of his failing kidneys. But the treatment isn’t perfect, and Marcus is often weak and tired. He also juggles frequent doctor appointments.

“It really takes a big chunk of my time and limits my ability to travel and go places,” he says.

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Connections - The Wait

An avid exerciser before his health problems began, Marcus can no longer enjoy bicycling, swimming and walking. Travel is also out of the question; he learned that the hard way.

Marcus and his wife, Robbin, tried celebrating his 60th birthday in Las Vegas, but the trip there took what little energy reserves he had. “I was a horrible companion,” he admits. “I spent most of my time in bed.”

His health problems have also curtailed play time with his grandsons, four of whom he’s helping to raise. “A couple of them play football, and I like to do things with them,” he says. “But I just don’t have the energy.”

Once a vibrant man, Marcus has watched his weight plummet nearly 50 pounds, sapping his strength even more. “It’s been a struggle,” he admits.

Marcus and his family have faced financial hardships, too. He’s been without a full-time job since 2006 when his heart condition put an end to a successful career as a personnel manager for a national human resource consulting firm. To help make ends meet, he drove a school bus, but, last year, he was forced to give that up, too, when he became too sick to transport his young passengers.

Robbin was downsized from her job a year ago, making their financial situation even more desperate. Fortunately, Marcus has been able to get health insurance with the help of the National Kidney Foundation, but money is always tight. In fact, they recently sold their home and are in search of a rental property — not an easy task with a bankruptcy on their record.

But through it all, Marcus tries to remain positive and give 100 percent to the people who depend on him — his wife, his family and the congregation he serves as Associate Minister of Antioch Baptist Church in Waukegan. He also continues to be involved with Gift of Hope’s African-American Task Force and Advocates for Hope volunteer program as much as his time and health permit.

“I’ve been a registered organ donor since the 1980s, but I never thought I would need an organ transplant,” he adds. But now he does, and he hopes the gift of life comes his way soon so he can continue to remain an integral part of his children’s and grandchildren’s lives and serve the church.

In the meantime, he prays the next phone call will be the one he’s been waiting for.

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HOSPITAL PERFORMANCE METRICS* Gift of Hope works in partnership with 180 hospitals and nine transplant centers to meet the ever-growing demand for donor organs and fulfill 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 give hope and life to others.

Hospital

Organ Donors

Adventist GlenOaks Hospital Advocate BroMenn Medical Center Advocate Christ Medical Center Advocate Condell Medical Center Advocate Good Samaritan Hospital Advocate Illinois Masonic Medical Center Advocate Lutheran General Hospital Advocate Sherman Hospital Advocate South Suburban Hospital Advocate Trinity Hospital Alexian Brothers Medical Center Ann & Robert H. Lurie Children’s Hospital Blessing Hospital Captain James A. Lovell Federal Health Care Center VA Carle Foundation Hospital Centegra Hospital: McHenry Centegra Hospital: Woodstock Central DuPage Hospital Community First Medical Center Delnor Hospital Edward Hospital Elmhurst Memorial Hospital Franciscan St. Margaret Health: Dyer Franciscan St. Margaret Health: Hammond Glenbrook Hospital Holy Cross Hospital Ingalls Memorial Hospital John H. Stroger Jr. Hospital of Cook County Kishwaukee Community Hospital Little Company of Mary Hospital & Health Care Loyola University Medical Center

Donation Conversion Rate

Donation Authorization Rate

Timely Notification Rate

2 100 100 3 60 100 15 64 64 3 100 100 4 71 83 7 90 88 5 73 62 1 50 50 1 100 100 1 100 100 2 67 40 1 40 67 4 57 67 1 100 100

100 80 100 100 100 100 93 100 50 100 88 86 86 100

13 71 69 1 50 100 1 75 67 4 86 83 4 80 80 1 50 50 1 20 25 2 50 50 2 100 100 2 75 75 1 50 50 2 100 100 2 67 67 4 56 75 1 100 100 2 67 67 11 78 80

100 50 100 100 100 100 83 100 100 80 100 100 100 80 100 75 85

*Hospitals with at least one organ donor through 7/31/15. Note: Data subject to change due to Gift of Hope’s quality assurance process.

Connections - Hospital Performance Metrics

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HOSPITAL PERFORMANCE METRICS

Hospital

Organ Donors

MacNeal Hospital Memorial Medical Center Methodist Hospital: Northlake Methodist Hospital: Southlake Metro South Medical Center Mount Sinai Hospital Medical Center Northwestern Memorial Hospital Norwegian American Hospital OSF Saint Anthony Medical Center OSF Saint Francis Medical Center Palos Community Hospital Presence Mercy Medical Center Presence Resurrection Medical Center Presence St. Francis Hospital Presence St. Joseph Hospital Presence St. Joseph Medical Center Riverside Medical Center Rockford Memorial Hospital Rush-Copley Memorial Hospital Rush University Medical Center Saint Anthony Hospital Silver Cross Hospital Skokie Hospital St. Alexius Medical Center St. Catherine Hospital St. John’s Hospital St. Mary Medical Center Swedish Covenant Hospital Unity Point Health: Methodist Unity Point: Proctor Unity Point Health: Trinity University of Chicago Medical Center University of Illinois Hospital Vista Medical Center: East West Suburban Medical Center Total

Donation Conversion Rate

Donation Authorization Rate

Timely Notification Rate

1 67 60 1 75 67 2 80 100 2 50 50 1 50 100 5 83 83 6 62 58 2 67 67 4 100 100 22 71 72 1 33 50 1 100 100 2 60 50 1 50 50 1 25 33 7 67 67 1 50 33 6 89 88 3 100 100 11 63 63 2 100 100 4 83 83 1 67 50 1 25 25 1 50 100 7 83 82 2 67 67 2 75 75 3 100 100 1 100 100 1 100 NA 5 38 71 8 83 83 4 100 100 1 33 100 227 68% 74%

83 83 83 67 100 100 88 100 100 100 100 100 86 100 75 93 100 100 100 96 100 100 100 100 67 100 100 100 100 100 100 61 100 86 75 91%

Glossary of Terms 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.

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

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Connections - Hospital Performance Metrics

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

2015 * 2014 *

% Change

Organ Donors

224

183

22.40%

Organs Transplanted

626

540

15.93%

Organs Per Donor

2.79

2.95

-5.29%

Tissue Donors

1,014

1,095

-7.40%

Bone Donors **

837

742

12.80%

Heart Valve Donors **

99

123

-19.51%

Skin Donors **

412

792

-47.98%

122,365* in U.S.

5,178* in Illinois 1,398* in Indiana

*Through July 31 **Subset of Tissue Donors

The number of people waiting for heart, liver, kidney, lung, pancreas or small bowel transplants as of July 31, 2015.

Illinois Organ & Tissue Donor Registry

5,834,641

* Based on data from the Organ Procurement and Transplantation Network

As of July 31, 2015

57% 300 22 Of adults (18 or older) in Illinois are registered as organ and tissue donors.

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

In 2014, more than 300 people registered for transplants in Illinois died while waiting.

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

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

Make a Difference!

REGISTER TO BE AN ORGAN AND TISSUE DONOR

GiftofHope.org

Connections - State of Donation

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Indicia here 425 Spring Lake Drive Itasca, IL 60143

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

A Donate Life Organization

ADDRESS CORRECTION REQUESTED

“Like” Gift of Hope on Facebook Gift of Hope’s Facebook page ranks among the top organ procurement organizations across the country in “likes” thanks to the support of our community. That’s saying a lot because 58 OPOs operate around the country to form the nation’s donation and transplantation network. As of mid-August, we’ve passed the 27,000 “likes” mark, placing us third among all OPO Facebook pages, and we continue to climb each day. Help us continue to rise in our ranking by “liking” us and following us regularly to learn more about Gift of Hope and read the awe-inspiring stories on donation that we share with followers each day. You’ll find us at www.facebook. com/www.giftofhope.org. You can also link to us on our website, GiftofHope.org.

Calendar of Events September 26 Advocates Summit: Tools for Telling the Donation Story Springfield, Ill. September 26 Chicago Football Classic Community Affairs Event Soldier Field Chicago Ill.

October 4 A Celebration of Hope and Life: Hispanic Donor Family Tribute National Museum of Mexican Art Chicago October 9 Lifesaving Partner Awards Event Hyatt Lodge at McDonald’s Campus Oak Brook, Ill.

October 24 A Celebration of Hope: Donor Family Tribute Gift of Hope Organ & Tissue Donor Network Itasca, Ill. October 29 Tragedy to Hope: Rewriting the Story Seminar for Hospital Professionals Gift of Hope Organ & Tissue Donor Network Itasca, Ill.

For more information on these and other events, visit GiftofHope.org.