Page 1

FIRST QUARTER 2017

A NEWSLETTER FOR GIFT OF HOPE’S PARTNERS AND FRIENDS

CONNECTIONS

THIS ISSUE Another Record Year Drive for Life Act Chicago Organ Summit AFTERCARE SERVICES


CONNECTIONS IN THIS ISSUE

3

4

8

12

2016: Another Record Year

Gift of Hope provided a record 1,242 organs for transplant in 2016 through the generous decisions of 392 donors and their families.

Drive to Lower Registration Age With Gift of Hope’s support, Ill. Secretary of State Jesse White is spearheading legislation to lower the donor registration age in Illinois to 16.

Chicago Organ Summit

Gift of Hope united with health care and government leaders Feb. 21 to announce a commitment to boost organ transplants in Illinois.

Gains Waits for Lifesaving Gift LaTonya Gains has embraced the journey she’s on to stay healthy and positive as she waits to receive a lifesaving kidney transplant.

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 Bryn Phinney 630/758-2775 bphinney@giftofhope.org Shauna Schuda 630/758-2744 sschuda@giftofhope.org

On the Cover

On Feb. 21, Gift of Hope joined leaders from Chicagoarea transplant centers and city and state government at the inaugural Chicago Organ Summit to announce a collective commitment to increase organ transplants in Illinois by 2020 and position Chicago as the nation’s hub for organ transplantation. The summit sought to empower governments, health systems, transplant centers and other donation advocates in Illinois to unite in a cooperative effort to reduce the organ transplant waiting list in Gift of Hope’s service area. 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.

Marion Shuck 630/758-2616 mshuck@giftofhope.org Sonia Sotello 630/930-5831 ssotello@giftofhope.org

Copyright © 2017. All Rights Reserved.


Gift of Hope Sets One-Year Performance Record

‘Three-Peat’ for 2016

For the third consecutive year, Gift of Hope helped to offer the gift of hope and life to more people than ever before through its ongoing mission of saving and enhancing people’s lives through organ and tissue donation. The more than 270-person team worked with its external partners to honor the donation decision of 392 organ donors and their families, providing a record 1,242 lifesaving organs for transplant in 2016. The committed team also worked with 1,711 donors and their families who offered gifts of tissue that will save and enhance thousands of lives. “These achievements underscore the remarkable dedication of Gift of Hope and its health care partners in their shared efforts to honor the gifts of donors and donor families and bring lifesaving organs and tissue to people in need,” said Kevin Cmunt, Gift of Hope President/CEO. “In 2016, we helped more people than ever before in our 30-year history. But none of this would have been possible without the generosity and compassion demonstrated by individuals and family members to offer the gift of life to others through organ and tissue donation.”

All About People

Although numbers serve as a strong measure of Gift of Hope’s successes, it’s the people who truly illustrate the positive impact the organization has on the community. Every year, Gift of Hope facilitates reunions between donor families and recipients as part of the aftercare services it provides to these two important constituency groups. In August, four families connected through the lifesaving process of donation were brought together for the first time during a private gathering that Gift of Hope coordinated. The meeting 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. (See picture above.) Christine Ho, Jonathan’s wife, expressed how it felt to meet the people who received her husband’s gifts. “I was nervous because I didn’t know how I would feel or react, and I could tell that my son and daughter, Brycen and Taylor, were nervous as well,” she said. “As we met the families, a calmness came over my children and me at the thought that part of Jonathan lives on in these people. This helped us through our healing process.”

When Gift of Hope can bring donor families and transplant recipient families together, it brings donation full circle and lets people witness first-hand the positive impact that donation has on everyone, according to Cmunt. “The families we serve are the driving force for us to continue working hard to educate the public about the lifesaving benefits of donation,” he said. Although Gift of Hope and its donation partners saved many lives as a result of the organization’s record-setting performance in 2016, the shortage of donated organs remains critical. Nearly 5,000 people in Illinois and 1,500 people in Indiana currently are waiting for organ transplants, and the gap between the number of people waiting and available organs continues to slowly widen. “That’s why registering to be a donor is so important and why we work so hard to educate the public about donation,” Cmunt said. “More than 6 million people have registered as donors in Illinois, and 3.7 million have registered in Indiana. In Illinois, that’s just 60 percent of all people eligible to register in the state. So we still have a long way to go to get those remaining 3.8 million Illinois residents to make the decision to save lives through donation.” The selfless decision to be an organ and tissue donor goes a long way. A single organ donor can save up to nine lives and, when combined with tissue donation, a single donor can save or improve the lives of more than 25 people.

Raising the Bar

Although 2016 was a record-setting year for Gift of Hope, the organization will not rest on its laurels in 2017. “We’ve raised the bar to a new height for the organization, but we expect to raise it even higher in 2017,” Cmunt said. “Our goal is to increase organ donors and organs transplanted to 500 and 1,500, respectively, by 2020 by establishing greater public awareness of our organization, strengthening our relationships with hospitals and transplant centers, and enhancing the way we provide medical management to potential donors. These and other strategies will help us improve donation outcomes and help us carry out our mission of saving and enhancing the lives of as many people as possible through organ and tissue donation.”

3


Drive for Life Act

Would Boost Donor Registry Numbers Illinois is one of only three states that currently doesn’t allow 16- and 17-year-olds to register their wishes to become donors when they receive their driver’s licenses or state identification cards. But that could become a thing of the past if Illinois legislators pass the Drive for Life Act.

Jacob Lenzini, 17, is sharing the message of the importance of donation with others in his age group. His father offered the gift of life as a donor in 2014.

The legislation was introduced in the Illinois House of Representatives and Senate in early February. It passed the House in early March and is now being deliberated by the Senate.

Ill. Secretary of State Jesse White estimates the new law would allow an additional 350,000 individuals currently excluded from the organ donor registry to sign up. And that translates to thousands of lives saved or improved through organ and tissue donation. The only other states without similar legislation are Mississippi and New Jersey.

4

CONNECTIONS

“Our goal is always to save lives,” White explained. “In 2016, more than 250,000 16- and 17-year-olds received their driver’s licenses. In that same year, more than 95,000 16- and 17-yearolds received their state IDs. This is an important step to reduce the number of people on the transplant waiting list.” Representatives from Gift of Hope joined forces with White, State Sen. Mattie Hunter (D-Chicago) and State Rep. Deb Conroy (D-Villa Park) to introduce the Drive for Life Act in Springfield. In the Illinois House it’s House Bill 1805, and in the Illinois Senate it’s Senate Bill 868. “Although a single individual can save or enhance more than 25 lives through organ and tissue donation, Illinois residents under 18 are currently prevented from registering as organ donors,” explained Gift of Hope President/CEO Kevin Cmunt. “Yet more than 4,700 Illinoisans remain on the waiting list to receive lifesaving organs, and, tragically, an estimated 300 will die in 2017 alone waiting for a transplant.” That’s something Conroy and Hunter take very personally.


“Organ donation is an interesting thing in that you don’t really know the statistics until it affects your life,” said Conroy, whose husband is on the waiting list for a kidney transplant. “It has affected my life and the lives of my four sons because their dad is waiting for an organ. It’s a very difficult road for families, but with this legislation we can save more lives.”

“We’re extremely grateful to the Secretary of State and to Sen. Hunter and Rep. Conroy for their support,” she said. “We’ve also had tremendous support from legislators in both chambers and both parties.”

“I have a personal commitment to this,” added Hunter, whose niece is also on the waiting list. “I want to keep my niece alive. I sponsored this legislation because I care about people. Too many people are dying. Losing 300 people a year is just not acceptable at all. We want to lower the age because we need more people to participate in the program.”

Cmunt said it’s imperative that individuals who want to become registered organ and tissue donors are allowed every opportunity to do so. That includes people like Jacob Lenzini, 17, a junior at Maine South High School in Park Ridge, Ill. His father, Chris Lenzini, became a donor in November 2014.

White, a long-time enthusiastic supporter of organ and tissue donation, echoed their sentiments. “Our goal is to save lives,” he said. “Thousands of Illinoisans are on the waiting list for organs, and we want to make sure that we do all we can to give them an opportunity to get a second chance at life or help to improve their quality of life.” Passage of the legislation is expected to have a halo effect, increasing registration among 18- to 21-year-olds, a population whose registration rates lag behind other age groups. But, most of all the Drive for Life Act would start a communitywide dialogue about the importance of donation.

“We’ll never get to see my dad again, so to have a piece of him still alive and out there is a great thing,” he said. “He was a great guy. Organ donation fit incredibly well with his personality, and I think, really, it should fit well with everybody’s personality.” While the legislation gives 16- and 17-year-olds the right to express their wishes, parents will have the final say in the matter until their sons and daughters turn 18. LifeGoesOn.com

“This is legislation that will empower young adults to let their intentions be known,” Conroy explained. “It starts a conversation, and the conversation is what we need so we can save more lives.”

Ill. Secretary of State Jesse White said the Drive for Life Act would offer the donor registration option to 350,000 more people in Illinois.

State Sen. Mattie Hunter, whose niece is on the kidney transplant waiting list, is sponsoring the Drive for Life Act in the Illinois Senate.

Estimates show that about 95 percent of the population nationwide supports organ donation but only 51 percent are registered donors. The Drive for Life Act could change that dramatically by giving thousands of additional Illinois residents the opportunity to say “yes” to donation.

“We’ve been waiting for the right time to get everyone on board,” said Gift of Hope Advocacy and Policy Coordinator Lauren Ryan. “New York signed its law last August, and that left just Illinois, Mississippi and New Jersey as states that still have the donor registration age set at 18. All of our neighboring states, including Indiana, Missouri and Wisconsin, have similar laws in place.” Thanks to the support of White, Hunter and Conroy, both bills passed unanimously through committee in both chambers in late February. Ryan anticipates successful passage of the legislation in late spring or early summer.

“Jacob represents what a lot of 16- and 17-year-olds think about this issue,” Ryan said. “We want this law to start a conversation among families about organ and tissue donation and what it means to be altruistic.” Allowing these young adults to declare their desires about organ and tissue donation can help make the decision easier for parents and guardians if their loved ones should become potential donors, Ryan added. “Being in the Illinois Organ/Tissue Donor Registry eases that difficult decision for family members at a really difficult time,” she said.

How to Support the Drive for Life Act Gift of Hope has created a website to help Illinoisans learn more about the Drive for Life Act and how to contact state legislators to encourage them to pass the legislation. Visit DriveForLifeIllinois.org and click on the Contact Your Legislator link. 5


DONATION BRIEFS

Inaugural ITF Fundraiser Surpasses Goal Donation supporters contributed more than $400,000 at the Illinois Transplant Fund’s inaugural Celebration of Life fundraiser in November. That’s enough to provide insurance premium support to 64 ITF patients for a year.

Cook County Commissioner Jesús “Chuy” García served as a co-host for the Celebration of Life event.

More than 140 guests, including local and state dignitaries, ITF patients, transplant recipients, donation partners and special guests, attended the event in Chicago.

Established by Gift of Hope in 2015, the ITF helps uninsured people gain access to organ transplants and the follow-up care they need to live long, healthy and productive lives. Its goal is to give transplant candidates in Illinois and northwest Indiana access to transplant services regardless of their income or insurance eligibility.

Cook County Commissioner Jesús “Chuy” García, the event’s co-host, addressed attendees about the need to help uninsured people gain access to organ transplants. “Together we can provide ongoing support to the ITF to allow for the expansion of access to transplant services for people who cannot afford the growing cost of insurance premiums and who desperately need lifesaving transplants,” he said. “Gift of Hope is proud of the work it has done with the creation of the ITF, the first program of its kind in the nation,” said Kevin Cmunt, President/CEO of Gift of Hope. “To date we have accepted more than 100 people into the program to make sure they get the care they need. This would not be possible without the generous contributions and partnerships with world-class transplant hospitals and the community.” Several of Chicago’s leading transplant centers made generous financial donations at the event to support the ITF. They included Rush University Medical Center, $100,000, The University of Chicago Medicine, $150,000, and Loyola Medicine, $125,000. Attendees had the opportunity to make individual donations through a real-time crowdfunding page created for the event. Real-time supporters pledged more than $12,000, surpassing the event’s real-time fundraising goal of $10,000.

New HR Exec Joins Gift of Hope’s Leadership Team Lori Malatesta has joined Gift of Hope as Vice President of Human Resources and Organizational Development, a new position for the organization. In her role, Malatesta will focus on establishing a leadership development plan, attracting and developing high-level talent and building a culture characterized by passionate people, outstanding teams and compassionate service. With more than 25 years of experience as an HR leader, Malatesta specializes in change management, training, succession planning and organizational development. Before joining Gift of Hope, she provided strategic HR leadership to large, best-in-class companies such as Honeywell International, AMDOCS, Market Day Corporation and Commonwealth Edison. Most recently, Malatesta served as the Chief Human Resources Officer at KI Industries, where she developed and led strategic HR initiatives, including the implementation of goal alignment, talent calibration and performance management processes. “I’ve worked at for-profit companies in the past, but working for a not-for-profit organization that gives back to local communities is important to me,” said Malatesta. “I am excited to provide my leadership and expertise to Gift of Hope.”

6

CONNECTIONS

“Because of the nature of its work, Gift of Hope relies on great employees to carry out its mission,” said Kevin Cmunt, President/CEO of Gift of Hope. “We don’t have any special technology or expensive assets because our work requires passionate people with special skills and dedication to our donors and donor families. We are happy to have Lori on our team as we continue our mission to save and enhance the lives of as many people as possible through organ and tissue donation.”

Lori Malatesta

Malatesta is certified as a Senior Professional in Human Resources and is a member of the Society for Human Resource Management and the Human Resource Management Association of Chicago. She holds a bachelor’s degree in Industrial/ Organizational Psychology from the University of Illinois at UrbanaChampaign.


Cole Receives Inaugural AlloSource Inspiration Award Brian Cole, MD, an orthopedic surgeon at Midwest Orthopaedics at Rush in Chicago, received AlloSource’s inaugural Dr. Steven Gitelis Inspiration Award at a special ceremony in January at Rush’s offices in Chicago. The award honors a physician or clinician who inspires through his or her work in treating patients with donated human allografts.

“Dr. Gitelis is a thought leader in the area of allograft research,” said Dr. Cole. “I am honored to receive this award and grateful to all those at my office who have helped make this happen, to Gift of Hope and to AlloSource.” Tom Cycyota, President and CEO of AlloSource, presented the award to Dr. Cole. “Dr. Cole has been a great partner to AlloSource and a staunch advocate for the use of allografts,” he said. “We appreciate his dedication to his patients and advancing the science of medicine.”

Dr. Cole, who is also a professor in the Department of Orthopaedics at Rush University Medical Center, received the award in recognition of his work using allografts to help his patients heal from a variety of injuries. The award’s namesake, Dr. Gitelis, is one of AlloSource’s founding physicians. He also serves as Gift of Hope’s Tissue Medical Director and is a past member of the Gift of Hope Board of Directors.

Dr. Brian Cole (right) received AlloSource’s inaugural Dr. Steven Gitelis Inspiration Award. Dr. Gitelis (left) was on hand to help present the award.

Centennial, Colo.-based AlloSource is one of Gift of Hope’s tissue partners. It is one of the nation’s largest providers of cartilage, bone and soft-tissue allografts for use in surgical procedures and wound care to advance patient healing.

Gift of Hope Board Chairperson Anne Gulotta was also on hand for the award presentation. “Dr. Gitelis has been instrumental in developing tissue donation and recovery, and his dedication to Gift of Hope has helped shape the organization into the successful organ procurement organization it is today,” she said.

Dr. Gitelis also attended the ceremony and thanked AlloSource for the recognition it bestowed upon him. “I’m honored and humbled to have this award named after me,” said Dr. Gitelis. “Dr. Cole and I share the same commitment to advancing medicine for patients, and AlloSource has been an important part of this journey.”

U.S. Organ Donation Continued Record Pace in 2016 Organ transplants performed in the United States in 2016 reached a new record high for the fourth consecutive year, according to the United Network for Organ Sharing. For the year, 33,606 transplants were reported, representing an 8.5 percent increase over the 2015 total and a nearly 19.8 percent increase since 2012. Of the total organ transplants performed in 2016, 30,505 organs were recovered from 9,974 deceased donors. This is an increase of 8.97 percent and 9.72 percent, respectively, from 2015. In addition, 5,975 organs were recovered from living donors, bringing the total number to 36,480 organs that benefitted about 33,600 recipients in 2016. Gift of Hope was among the group of 36 organ procurement organizations that set one-year performance records as measured by either the number of donors they worked with or the number of organs recovered and transplanted. (See related story on p. 3.) One key to the donation community’s success has been the willingness of OPOs, donor referral hospitals and transplant centers

to work as one to help make donation happen. Together, these groups have been working hard to improve the donation process to maximize donation opportunities. Donation education and enhancements in medical management of potential donors have also played major roles in the donation community’s success. Hospital and forensics professionals have become better informed and educated about the donation process and their roles in medically managing donors in order to produce successful donation outcomes. This has led to a growth in the number of potential donors who become actual donors, according to Gift of Hope President/CEO Kevin Cmunt. “We are working together to ensure that as many organs as possible are accepted and used for the people who will benefit from them the most,” Cmunt said. “Since more than 80 percent of organs made available for transplantation come from deceased donors, these kinds of developments contribute significantly to the number of lives saved.”

7


GIFT OF HOPE UNITES WITH TRANSPLANT CENTERS, HEALTH SYSTEMS AND POLITICAL AND GOVERNMENT LEADERS TO MAKE CHICAGO THE NATION’S HUB FOR ORGAN TRANSPLANTATION

8

CONNECTIONS


Chicago has always been known as a city that works hard and gets things done. The poet Carl Sandburg affectionately dubbed it the “City of the Big Shoulders” more than a century ago. Across the country, Chicago is often referred to as the “Crossroads of America,” and, globally, it’s recognized as a leading transportation hub because of its geographic location.

to continuing that growth. In fact, over the next four years, it plans to increase organs recovered by 300 more per year, roughly equivalent to the number of patients who die waiting for lifesaving organ transplants in Illinois and northwest Indiana each year. Right now, more than 4,700 men, women and children living in Illinois are waiting for lifesaving organ transplants.

On Feb. 21, representatives from the City of Chicago, the Illinois Secretary of State’s Office, Gift of Hope and Chicago-area transplant centers and health systems assembled at the inaugural Chicago Organ Summit to announce plans to establish Chicago as a different kind of hub — the nation’s hub for organ transplantation.

Gift of Hope plans to increase transplantation in the city and state by 35 percent by the year 2020, eventually reaching 2,000 organ transplants annually. “We can do that by raising awareness in the community and strengthening our partnerships with the hospitals,” Cmunt said. “It’s about working hard to find homes for all of those organs we recover. I’m confident that we will get there.”

A PROMISE TO LEAD

Dozens of guests and local and state dignitaries crowded into the historic Chicago Cultural Center to listen to how Chicago will make good on its promise to lead the nation in organ transplants. Among those speaking at the event were Ill. Secretary of State Jesse White, Chicago Mayor Rahm Emanuel, Chicago Police Superintendent Eddie Johnson, who is on the kidney transplant waiting list, and physicians and representatives from Chicago’s major transplant centers and health systems. The summit was conceived and produced in response to the June 2016 White House Organ Summit and former President Barack Obama’s call to increase organ transplantation nationwide. “We thought that was cool, so we went to the mayor and suggested that we should do this in Chicago,” said Kevin Cmunt, President/ CEO of Gift of Hope. “The event created a forum for us to bring the transplant community and our hospital systems together to make commitments designed to improve organ donation in the city.” Summit speakers addressed how their organizations would help Chicago reach its goal — and ultimately save more lives. Families touched by organ donation and people who both received and are waiting for transplants shared their stories of hope, too, adding a dramatic and often poignant dimension to the gathering. “The summit is a true collaborative effort that unites Chicago in making a positive impact on organ transplantation,” Cmunt said. “By working together, we can save more lives, reduce the wait and facilitate new breakthroughs aimed at enhancing patient outcomes and providing expanded support for donors and recipients.”

Eliminate the Wait

Through its shared donation efforts with the 180 hospitals it works with to make donation happen, Gift of Hope has increased organ donation by 50 percent over the last four years and is committed

Chicago Mayor Rahm Emanuel commended Gift of Hope on its aggressive goal to boost transplants.

High school student Jacob Lenzini shared the story of his father, Chris, who became an organ and tissue donor in 2014.

If 2016 is any indication, Gift of Hope is well on its way. During the year, Gift of Hope recovered and made available a record 1,242 lifesaving organs for transplant through the generous decisions of 392 donors and their families. That represents a 15 percent increase over 2015. What’s more, 1,711 donors and their families authorized the donation of bone, skin, heart valve and other tissue for transplant.

GIFT OF HOPE COMMITMENTS

“In 2016, we helped more people than ever before in our 30-year history and made a huge difference in the lives of many people,” Cmunt said. Gift of Hope plans to continue this upward trend by: • Partnering with the City of Chicago to strengthen bonds with first responders. • Expanding relationships with the Cook County Medical Examiner’s Office, State’s Attorney’s Office and Stroger Health System to strengthen support for organ and tissue donation. • Expanding the role of its Critical Care Advisory Group to educate critical care clinicians throughout Illinois about donation through seminars, webinars and individual consultation. • Continuing to advocate for improvements to United Network for Organ Sharing and the Centers for Medicare & Medicaid Services organ allocation and utilization policies. • Growing partnerships with organizations involved in the care of potential organ donors and transplant recipients. • Expanding public education about the benefits of organ and tissue donation by growing its volunteer staff, increasing community education programs and delivering consistent messaging using traditional, social and digital media.

Julie Morita, MD, Commissioner of the Chicago Department of Public Health, said the summit supported the city’s commitment to improve the health of Chicagoans.

Riccardo Superina, MD, Head of Transplant Surgery at Chicago’s Lurie Children’s Hospital, voiced Lurie’s commitment to provide more liver transplants for children.

9


Transplant Center, Health System Commitments At the inaugural Chicago Organ Summit, representatives from Chicago’s transplant centers and health systems voiced their organizations’ commitments to help increase organ transplantation and establish Chicago as the nation’s hub for organ transplantation. Here are a few: The inaugural Chicago Organ Summit attracted representatives from the City of Chicago, the Illinois Secretary of State’s Office, Gift of Hope and Chicago-area transplant centers and health systems. Speakers shared their organizations’ commitments to establish Chicago as the nation’s hub for organ transplantation.

Also vital to increasing organ transplantation in Illinois is Gift of Hope’s longtime relationship with White and the Secretary of State’s Office. During his remarks, White spoke about important legislation that would allow 16- and 17-year-olds to register for the Illinois Organ Donor/Tissue Donor Registry when they obtain their driver’s licenses or state identification cards.

DRIVE FOR LIFE ACT

If passed by the Illinois legislature, the new Drive for Life Act would allow an additional 350,000 individuals currently excluded from the organ donor registry to sign up. That translates to thousands of lives saved or improved through organ and tissue donation. Legislation co-sponsors Rep. Deb Conroy (D-Villa Park) and Sen. Mattie Hunter (D-Chicago), who have both been touched by donation, joined White at the podium and shared their stories. Conroy’s husband and Hunter’s niece are awaiting organ transplants. “Organ donation has become a personal journey for me,” Conroy said. “Sixteen- and 17-year-olds should have their voices heard. I’m very confident this will go through.” A key benefit of the legislation is the platform it provides for families and others across the state to begin conversations about the benefits of organ and tissue donation. “Our mission is to end the waiting,” White added. “Together, we can continue to make this city and state a national leader in organ and tissue donation. We can do this because it’s the right thing to do.”

A SON’S STORY

Jacob Lenzini, 17, a junior at Maine South High School in Park Ridge, Ill., couldn’t agree more. His father, Chris Lenzini, became an organ and tissue donor in 2014. Recently, Jacob and his family met the recipient of Chris Lenzini’s heart. “It truly is a gift of hope,” Jacob said. “It’s the only positive that can come when a family member dies.”

10

CONNECTIONS

In brief remarks to the crowd, Emanuel commended Gift of Hope on its aggressive goal to boost transplants. “That is a good goal, and you can’t accomplish something if you don’t set a goal,” he said. “If one person saves one person’s life, it’s like the equivalent of saving the whole world,” he added, paraphrasing language from the Talmud. Joining Emanuel at the podium was an emotional Chicago Police Superintendent Eddie Johnson, who said he’d never forget the day a doctor told him a childhood case of strep throat had damaged his kidneys. “Imagine him telling you at 25 years old that, probably within three or four years, you’re going to need a new kidney,” he said. “Yet, here I am 31 years later with these two puppies (still-functioning kidneys).”

A DESPERATE NEED

Johnson said the list of potential living donors for him has been narrowed to about a dozen, and his kidney transplant could happen within a matter of weeks. “Organ transplants are so desperately needed,” he said. “And the thing is, we can do it. It’s not a heavy lift. I will be forever a spokesman for organ donation because I believe in God and I believe it (donation) works.” Before representatives from each of Chicago’s major transplant centers and health systems took their turns at the podium, Chicago mother of two Christine Ho tearfully recounted her family’s experience as a donor family. Ho lost her husband, Jonathan, also a Chicago police officer, when he was killed in a motorcycle accident in 2015. He had already made the courageous decision to be a donor years earlier so Christine didn’t have to. “That little (organ donor) symbol on his license was a gift to me,” she said. “He created a lasting legacy for my children, our family, the recipients and their families. Now that legacy touches all of you. He left this world saving lives. Make a decision to save lives, too. Then tell the people you love.”

• Advocate Health Care plans to drive its donation authorization rate up to 65 percent over the next year through focused education of the community, physicians and clinical staff. • Ann & Robert H. Lurie Children’s Hospital of Chicago committed to growing the transplantation of pediatric patients by performing more split-liver transplants. Lurie also plans to expand donation of intestines to help premature babies reliant on total parenteral nutrition to survive. • Loyola University Medical Center, which led all other Illinois centers in heart and lung transplants in 2016, plans to launch a pancreas transplant program in 2017. • Rush University Medical Center plans to double the number of kidney transplants it performs over the next three years with kidneys from living donors. It also plans to use at least 40 deceased donor kidneys a year — an important alternative for patients who have no immediate living donor options. • The University of Chicago Medicine plans to increase its transplant activities by 20 percent over the next five years and help more patients on Chicago’s South Side, in southern Illinois and northern Indiana get transplants. • University of Illinois Hospital & Health Sciences System committed to using innovative drugs and surgical technology to allow all eligible patients to undergo kidney transplantation, including morbidly obese individuals who are routinely refused transplants at other centers. • Northwestern Medicine plans to expand its living donor programs for kidneys and livers, continue its groundbreaking research in immune tolerance that may one day eliminate the need for anti-rejection medications, and work toward the ultimate solution to the organ shortage — building organs through the combination of stem cell technology and tissue engineering.


AFTERCARE Workshops and Events Here is a schedule of upcoming family workshops and events for donor family members. If you would like to attend, volunteer or get more information, please call Gift of Hope Aftercare Services Coordinator Renata Krzyston at 630/758-2740 or email her at rkrzyston@giftofhope.org.

Educational Workshop 1 – 3 p.m. Sunday, May 7 Springfield

Open House Workshop 6 – 8 p.m. Thursday, May 25 Itasca Donor Family Tribute 1 – 4 p.m. Sunday, June 11 Central Illinois

Memory Box Assembly 5 – 8 p.m. Thursday, July 20 Itasca Open House Workshop 1 – 3 p.m. Sunday, Aug. 20 Peoria

Memory Box Assembly 1 – 4 p.m. Saturday, Sept. 23 Itasca Donor Family Tribute

1 – 4 p.m. Sunday, Oct. 15 Chicago Area

Open House Workshop

6 – 8 p.m. Wednesday, Nov. 29 Itasca

Educational Workshop 1 – 3 p.m. Sunday, Dec. 10 Itasca

Gift of Hope Amps Up Aftercare Services for Donor Families Gift of Hope honors the sacred gifts offered by more than 2,000 organ and tissue donors each year by offering ongoing post-donation support to donor families through special services, events and workshops. Many families become long-term donation advocates and go on to become Gift of Hope Advocates for Hope volunteers. Of the 300 currently active volunteers, 75 are donor family members, a true testament to their commitment and support of donation. In 2016, Gift of Hope’s Donor Family Services team amped up its aftercare support programs for families who have lost loved ones and have made the generous decisions to help others through donation. “Our donor families are extremely kind, generous, compassionate and wonderful,” said Renata Krzyston, Donor Family Services Coordinator at Gift of Hope. “We want to do everything we can to guide and support them. Their loved ones offered the gift of life, and we want to be there for them and somehow give back to them through services that really make a difference.” Gift of Hope offers various events and workshops throughout the year to educate, inform and support donor families. They include: • Writing Workshops: Many donor families want to contact the person or persons who received their loved one’s gifts. Similarly, transplant recipients often want to meet the family or loved ones of the donors who saved their lives. The Writing Workshop guides donor families and transplant recipients through the writing process with special tips and guidelines to help put their poignant emotions into words and onto paper. • Donor Quilt Square Workshops: The Donor Quilt Squares Program honors the legacies of the men, women and children who offered hope and life through organ and tissue donation. It is a visual tribute that helps families honor their loved ones’ memories and extends the impact

of their generous gifts. Twenty squares are compiled to make each donor quilt. Currently, 12 quilts travel throughout Gift of Hope’s Illinois and northwest Indiana service area for display at public events, memorials and meetings. The Donor Quilt Square Workshop provides tips and creative ideas for donor families to create their personalized squares with love, words and images of loved ones remembered. • Memory Box Assembly: Each donor family that Gift of Hope is privileged to encounter receives a memory box that contains a booklet of donation information and resources, a medallion, bracelets and Gift of Hope lapel pins. The boxes are assembled by donor family members, transplant recipients, Advocates for Hope volunteers and Gift of Hope staff members who gather periodically to build hundreds of these donor family keepsakes during an evening of fellowship and camaraderie. Gift of Hope hosts several memory box assembly sessions throughout the year Gift of Hope has offered programs like the Donor Quilt Square Workshops for many years while others like the Writing Workshops are new. Participation in memory box assembly sessions has grown from three Gift of Hope volunteers to more than 40 participants who assemble boxes destined to provide comfort and hope to future donor families. In 2017, Gift of Hope will expand its aftercare services to include Care Circles and Educational Workshops, which aim to further strengthen, support and unite the organ and tissue donation and transplantation community. Additionally, the Writing and Donor Quilt Square workshops will be combined into open house events that will offer multiple educational and informational services for attendees. “Gift of Hope’s staff embraces opportunities to support our donor families,” said Krzyston. “Anytime we call on them, the response is unbelievable. We have a force like no other: a wonderful group of individuals who are passionate about their jobs, who love our donor families and will do anything for them.”

11


The Wait: Embracing the journey is something LaTonya Gains learned to do out of necessity. The 46-year-old Peoria, Ill., woman has faced many medical challenges throughout her life, including diagnoses of thyroid cancer and lupus at ages 9 and 27, respectively. Now LaTonya is faced with a new challenge — end-stage renal disease caused by focal segmental glomerulosclerosis, or FSGS. In May 2015, the mother of one found out her kidneys were failing and failing fast. “My kidney numbers dropped from 44 to eight in a matter of weeks, LaTonya said. “My nephrologist called on a Thursday afternoon and told me to get to the Renal Intervention Center the next morning. I started hemodialysis on June 1, 2015.” The initial plan was for LaTonya’s sister, Tisha, to be a living donor for her. But, as fate would have it, Tisha broke her leg and is still recovering. “I told her if she didn’t want to give me her kidney that’s all she had to say,” LaTonya said, laughing. To boost her odds for transplant, LaTonya is on waiting lists at two transplant centers: OSF Saint Francis Medical Center in Peoria, where the average wait time is three to five years, and St. Luke’s Hospital in Kansas City, where the average wait time is 18 months to three years. She has an appointment at UW Health Transplant Clinic in Madison, Wisc., where she also hopes to get listed. “When I first started, I was on hemodialysis three days a week, 4.5 hours each session,” said LaTonya, who works as a commercial loan assistant. “I would leave work at 4 p.m., go to the dialysis center and get home about 10 at night to get ready for the next day. It was draining. After four months, my doctors switched me to at-home peritoneal dialysis. It’s easier because I can do it while I sleep. And, since my kidney numbers are stable, I convinced my doctor to give me one night off.” Last summer, LaTonya spent time in Florida, a trip that she says made her feel “free.” The best part of all was being able to preorder her supplies so that they were at her destination when she arrived. She credits dialysis for saving her life. Without it she said she would have died in 2015. However, LaTonya didn’t always feel this way. She admits to having difficulty coping with her situation.

12

CONNECTIONS

LaTonya Gains Has Hope for the Journey Church and her faith in God helped to restore her outlook. “I was upset, so angry and bitter,” she said. “I began doubting if there is a God. Getting my life back together spiritually was the best thing I could have done. The negative thoughts still come at times, but having a spiritual relationship makes it easier to handle.” LaTonya’s family, friends and coworkers also serve as her support system. Her supervisor even footed the bill for silicone bracelets that read, “LaTonya needs a kidney.” on one side and her mantra — “Hope … For the Journey” — on the other side. She estimates that she has about a year until she starts her new journey as a kidney transplant recipient. In the meantime, she’s keeping busy as a Gift of Hope Advocates for Hope volunteer. Her mission is to educate the African-American community about the need for and importance of organ and tissue donation. “Before this happened to me, I never thought about being an organ donor,” LaTonya said. “There are so many myths surrounding donation in my community, and I want to do my part to give people the right information.” In addition to volunteering with Gift of Hope, LaTonya has shared her story at several speaking engagements in the Peoria area. One of them was a “spoken word” night where she recited her poem, “Love Affair,” detailing her relationship with dialysis:

“God has a bigger and greater plan for me. You watch, look and listen and then you will see. When I get what God has for me, I’m curbing you and throwing your things in the trash. But I’ll always be thankful for that special time we had. What is it you say that God has for me? A Gift of Life. A gift called a kidney.” LaTonya wants to encourage and inspire people with her story. “This is what I was given on my journey,” she said with a smile on her face. “I have to make the best of it.”


HOSPITAL PERFORMANCE* METRICS

Gift of Hope works in partnership with 183 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 offer hope and life to others.

Donation Donation Timely Organ Conversion Authorization Notification Hospital Donors Rate Rate Rate Adventist Bolingbrook Hospital

1

67

67

94

Adventist GlenOaks Hospital

2

67

67

84

Adventist La Grange Memorial Hospital

1

20

20

85

Advocate Christ Medical Center

41

62

64

88

Advocate Condell Medical Center

7

80

80

97

Advocate Good Samaritan Hospital

6

62

67

83

Advocate Illinois Masonic Medical Center

3

36

40

71

Advocate Lutheran General Hospital

5

56

60

85

Advocate Sherman Hospital

2

50

50

100

Alexian Brothers Medical Center

8

91

91

99

Ann & Robert H. Lurie Children’s Hospital

2

30

38

84

Blessing Hospital

3

50

50

98

Carle Foundation Hospital

27

81

81

100

Centegra Hospital: McHenry

3

100

100

100

Centegra Hospital: Woodstock

1

100

100

100

Community First Medical Center

2

40

40

100

Community Hospital of Munster

3

67

67

100

Decatur Memorial Hospital

2

67

67

97

Delnor Hospital

3

80

80

86

Edward Hospital

6

70

70

92

Elmhurst Memorial Hospital

1

50

50

90

Evanston Hospital

1

50

50

98

Franciscan St. Anthony Health: Crown Point

3

75

75

98

Franciscan St. James Health: Chicago Heights

1

50

50

76

Franciscan St. James Health: Olympia Fields

1

67

67

66

Franciscan St. Margaret Health: Dyer

1

100

100

100

Glenbrook Hospital

2

67

67

92

Gottlieb Memorial Hospital

1

83

83

98

Holy Cross Hospital

1

40

40

60

HSHS St. John’s Hospital

10

50

50

99

HSHS St. Mary’s Hospital

4

88

88

100

John H. Stroger Jr. Hospital of Cook County

14

81

85

86

Kishwaukee Community Hospital

1

33

33

86

Little Company of Mary Hospital & Health Care

3

71

71

99

Loyola University Medical Center

15

64

64

91

*Hospitals with at least one organ donor through 12/31/16. 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 MacNeal Hospital

5

70

70

96

Memorial Medical Center

8

75

75

99

Mercyhealth (Rockford)

16

75

75

97

Methodist Hospital: Northlake

2

80

80

97

Methodist Hospital: Southlake

4

80

80

98

Metro South Medical Center

1

25

50

72

Morris Hospital

3

75

75

100

Mount Sinai Hospital Medical Center

12

50

52

86

Northwest Community Hospital

2

78

78

100

Northwestern Medicine Lake Forest Hospital

1

100

100

100

Northwestern Medicine Central DuPage Hospital

11

71

71

91

Northwestern Memorial Hospital

9

50

50

88

Norwegian American Hospital

3

86

86

97

OSF Saint Anthony Medical Center

3

70

70

98

OSF Saint Francis Medical Center

27

57

57

98

OSF St. Joseph Medical Center

1

75

75

97

Palos Community Hospital

2

100

100

99

Presence Resurrection Medical Center

2

60

60

97

Presence Saint Francis Hospital

3

83

83

98

Presence Saint Joseph Hospital

2

100

100

92

Presence Saint Joseph Medical Center

7

57

60

84

Presence Saints Mary and Elizabeth Medical Center

1

100

100

100

Riverside Medical Center

2

83

83

91

Rush Oak Park Hospital

2

100

100

100

Rush University Medical Center

11

55

55

93

Rush-Copley Memorial Hospital

3

83

83

94

Silver Cross Hospital

10

85

85

100

Skokie Hospital

1

50

50

100

St. Alexius Medical Center

4

67

67

91

St. Catherine Hospital

2

50

50

84

St. Mary Medical Center

2

67

67

98

Swedish Covenant Hospital

2

67

67

99

Unity Point Health: Methodist

2

67

75

95

Unity Point Health: Trinity

3

80

80

94

University of Chicago Medicine

19

67

69

94

University of Illinois Medical Center

11

46

46

95

Vista Medical Center: East

3

67

67

97

3

71

71

100

West Suburban Medical Center

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

392 68% 69% 93%

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 118,313*

4,990*

in the U.S.

in Illinois

1,561* in Indiana

The number of people waiting for heart, liver, kidney, lung, pancreas or small bowel transplants as of March 1, 2017. * 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 Dec. 31

2016*

2015*

% CHANGE

392 1,242 3.43 1,715 1,599 177 1,139

379 1,076 2.84 1,796 1,567 169 745

3.43% 15.43% 20.77% -4.51% 2.04% 4.73% 52.89%

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

**Subset of Tissue Donors

6,199,131 60% 300 :10 25

ILLINOIS ORGAN/ TISSUE DONOR REGISTRY

As of March 1, 2017

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

In 2017, more than 300 people registered for transplants in Illinois will die 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

iDonate: Apple Eases Donor Registration with New App “Hey, Siri! Can I become an organ donor?” Speak those words into your iPhone today, and Siri will give you this response: “You can register as an organ donor in the Health app. Just look for the Medical ID tab.” That’s because iPhone users curious about being organ donors will be encouraged to join the National Donate Life Registry directly through Apple’s Health app. Apple collaborated with Donate Life America to debut the feature on all U.S. phones with iOS 10, which Apple released last fall. Siri now responds to basic questions about organ

donation by encouraging registration through Donate Life America, which manages a national donor registry that complements state registries like those in Gift of Hope’s Illinois and northwest Indiana service area. To register, iPhone users just need to click underneath Siri’s response and answer a few brief questions to set up their Health app basics and Medical ID, a component that displays medical information in case of emergency. The process concludes with the option to register as a donor. Users can opt out of the decision, but they will be encouraged to register whenever they re-enter their Medical ID. Ultimately, Apple users who have yet to register as donors will find it hard not to make the donation decision. Even Siri is an organ donor — or would like to be, anyway. Don’t believe it? Just ask her.

Gift of Hope Staff Join Advocates to Help Make Memories A wonderful mix of more than 30 donor family members, transplant recipients and Gift of Hope staff and their family members recently assembled to assemble — as in assemble Gift of Hope “memory boxes” that Gift of Hope gives to all organ and tissue donor families.

heart mementos were packed with love and care by some very special people, many of whom have also been touched by donation.”

The group, which included more than 20 Gift of Hope staff members, gathered at Gift of Hope’s Itasca, Ill., headquarters and worked like a lean, mean assembly-line team to put together more than 600 of these very special keepsakes for donor families. Their approach may have been a bit machine-like, but their thoughts and spirit were anything but.

Each memory box contains an information packet about Gift of Hope and organ and tissue donation, a specially designed medallion, a card with a touching donation-related poem and Gift of Hope pins and wristbands. The inside flaps of the box have die-cut ovals where donor families can place pictures of their loved ones. Donor family members are encouraged to personalize the boxes by adding their own mementos and keepsakes to remind them of the richness their loved ones brought to their lives.

“More than one person mentioned that the families members who will be receiving these boxes do not yet know that they will be joining our special Gift of Hope family,” said Donor Family Services Manager Stefanie Dziedzic. “But how wonderful it will be when they find out that these made-from-the-

1q17 connections final  
Read more
Read more
Similar to
Popular now
Just for you