A JOURNEY FOR LIFE
2 017 Annual Report
table of contents CE O/BOARD CHAIR LETT ER . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 ST RATEGIC PLANNING MAAPE Award. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Eye Bank – DMEK Technique. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Lung Bioengineering/Hepatitis C Transplants. . . . . . . . . . . . . . . . 5 Swipe – Countermind Technology. . . . . . . . . . . . . . . . . . . . . . . . . . 6 CUSTOMER FOCUS A Special Place Ceremonies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Eye Bank – Dr. Arffa Dedication. . . . . . . . . . . . . . . . . . . . . . . . . . . 10 The REAL Reunion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Expansion of Donor Family Services. . . . . . . . . . . . . . . . . . . . . . . 12 Thanks2You Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Play It Forward Pittsburgh. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Hospital Challenges Ignite Enthusiasm . . . . . . . . . . . . . . . . . . . . 15 DMV Appreciation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 WORKF ORCE & OPERATIO N S Director of Innovation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Volunteer Program Earns Pinnacle Award. . . . . . . . . . . . . . . . . . . 21 Bruno Mastroianni: Pittsburgh CIO of the Year . . . . . . . . . . . . . . 22 Record Year for Tissue Donation. . . . . . . . . . . . . . . . . . . . . . . . . . 22 Making It Count: Metrics Highlight. . . . . . . . . . . . . . . . . . . . . . . . 23 LE ADERS HIP & MANAGE M EN T Financials. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Board of Directors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Advisory Board . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Tribute – Rudy Molnar . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 PR OF ILES Chance Dull, Liver Recipient . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29 Vicky Keene, Waiting List Candidate. . . . . . . . . . . . . . . . . . . . . . . 29 Nancy Jividen, Donor Mother . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Patti Fountain, Donor Mother . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Cybele Boehm, Kidney Recipient . . . . . . . . . . . . . . . . . . . . . . . . . 31 Chris Yanakos, Living Liver Donor . . . . . . . . . . . . . . . . . . . . . . . . . 31 Diana Bell, Kidney Recipient . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Jameson McKain, Heart Recipient . . . . . . . . . . . . . . . . . . . . . . . . 32 Max & Sue Sciullo, Donor Parents. . . . . . . . . . . . . . . . . . . . . . . . . 33
A Journey for
LIFE
We navigated through grief with families who said goodbye to their loved ones but who said yes to donation. Sometimes, our journeys were exhilarating. There’s truly nothing like hearing tears of joy on the other
They say the journey is the destination.
end of a phone call made to inform
It may be true in other realms of life,
survive.
but it’s especially true for our work at the Center for Organ Recovery &
someone they will receive the lifechanging transplant they need to
We even embarked on journeys of
Education (CORE).
reflection, honoring those who gave
It’s true because our journey of
ways we can ensure their deaths would
advocacy for organ, tissue and cornea donation is never over. We strive to be
the gift of life and looking for new never be in vain.
continually better at what we do.
Every individual you meet through
To register more donors.
is unlike any other you will ever come
To help more families. To save more lives. And when we reach the bar we’ve set for ourselves, we don’t rest. We raise it even higher, and continue the journey.
CORE has a story – a journey – that across. But if there’s one thing we think you’ll take away from this annual report, it’s that we are all on this journey together. And we are always moving forward.
That’s what our year in 2017 was all about. Setting forth a plan to double down on our commitment to the Baldrige Excellence Framework in what we dubbed our Journey to Excellence. The result? A year full of triumphs
S U S AN S TU AR T President & CEO
even amid the tribulations we see families enduring daily.
JIM K EL LY Board Chair
2
3
CORE Receives Highest MAAPE Honor CORE was recognized as the 2017 recipient of the Excellence Award from the Mid-Atlantic Alliance for Performance Excellence (MAAPE), it’s highest-level award. MAAPE is one of 31 regional and state Baldrige-based awards programs that helps organizations improve performance and outcomes, including productivity, workforce engagement, competitiveness, and customer and stakeholder satisfaction. Its process is modeled after the Baldrige Criteria for Performance Excellence, globally recognized as the standard for organizational excellence. “We are honored to receive this prestigious award, which is a testament to our staff’s unwavering commitment to save and enhance lives, while living our values of organizational integrity and compassion,” said Susan Stuart, president and CEO, CORE.
4
CORE’s journey to the award included a 50-page response to the criteria, a two-day site visit by seven independent examiners and a comprehensive scoring of all application criteria. With the win, CORE is now eligible to apply to the national Baldrige Program.
“
We are proud to recognize CORE for its performance excellence and outcomes that enable it to deliver the gift of hope through organ, tissue and cornea donation, said Bob Bitner, president and CEO, MAAPE.
”
CORE formally accepted the award during MAAPE’s 12th annual Conference and Awards Banquet in November at the Desmond Hotel in Malvern, Pennsylvania.
Two years ago, CORE identified the need to implement a new cornea processing procedure as part of its commitment to innovating its processes. In 2017, CORE took steps to make that new process – the DMEK technique – a reality for surgeons.
..........................
CORE Eye Bank Moves Toward DMEK Technique
“It’s important for local eye banks to stay relevant in emerging technological developments,” said Heather Werner, director of eye bank operations. “Surgeons are requiring more and more detailed types of cuts and processing.”
...............................
CORE also invested in intensive training so that CORE surgeons can be properly equipped to perform the technique.
CORE transplanted a record number of thoracic organs from hepatitis C-positive donors in 2017, an accomplishment made possible thanks to medical innovations and new partnerships. Driven by new treatments that allow hepatitis C-positive hearts and lungs to be transplanted safely into hepatitis C-negative patients, CORE has invested in training and resources.
The new DMEK technique produces the thinnest graft for transplant and promises to reduce transplant recovery time from months to days. In addition to purchasing a new microscope for the DMEK technique, CORE purchased ocular coherence tomography, an advanced machine that allows surgeons to “see the cornea better than we’ve ever been able to see them before,” Werner said.
CORE Maximizes Thoracic Organ Transplantation Through New Processes
“It’s driven by a staff mentality of ‘We need to place these organs,’” said Kurt Shutterly, chief operating officer. “Just because you have hepatitis C does not mean you can’t be an organ donor.” Shutterly said the process to transplant hepatitis C-positive organs is a lengthy one, involving more diagnostic testing through CT scans, echocardiograms and more to maximize organ function. “From our perspective, it’s about doing the right thing for the donor, donor family and recipients,” Shutterly said. “We want to maximize transplants for people who need them.”
Hep C throracic organs transplanted 2015 0 2016 1 heart 2017 7 hearts 7 lungs 5
Swipe to Donate Life App Helps Register New Donors In 2017, CORE became one of a number of organ procurement organizations using the Countermind’s Swipe to Donate Life mobile application to register new donors, making the process easier than ever.
The mobile app quickly and easily scans a driver’s license, accurately populates needed information, and then transmits that information to online state registries and the national Donate Life America registry. The whole process takes less than one minute.
6
CORE launched the use of the new technology with a volunteer designation drive – inviting CORE Advocates to install the app on their personal devices and compete for the most registrations between Sept. 1 and Dec. 31, 2017. The top two winners – donor mom Laura Gillum and kidney recipient Ezra Hildebrand, who received 66 and 51 designations, respectively – received gift cards as recognition of their achievement. UPMC Hamot, one of the six transplant centers in CORE’s service region, is also using the app to register new donors as part of the intake process at their kidney transplant clinic.
7
Special Place Ceremonies Honor Donor Heroes CORE was honored to once again pay tribute to the truest heroes of donation – donors and their families – at our annual A Special Place ceremonies, held in Pittsburgh in June and Charleston, West Virginia in September. The memorial celebrations honored the individuals who gave the gift of life in 2016 through organ, tissue and cornea donation. The first of the two memorial services, held at CORE’s Pittsburgh headquarters, brought together more than 125 donor families. At that service, donor families met 3-year-old Rosalina “Rosie” Vargas, just one of the nearly 115,000 people on the national transplant waiting list hoping for a personal hero. They also heard from donor mom and transplant nurse Mary Grace Hensell. She told the moving story of her son, Brian, who after a fatal car crash in 2011, saved multiple lives as a heart, liver, kidney and pancreas donor. She was joined at the ceremony by her son’s heart recipient, Melvin Protzman of Butler, PA. Marty Brown, 23, detailed his journey from heart transplant waiting list candidate just one year before to grateful recipient. The family of the young man who donated his heart to Marty was in the audience. Among the guest speakers at the West Virginia ceremony were Nancy Jividen of Eleanor, WV, mother of Shane Jividen. He was an organ, tissue and cornea donor in 2013 following his death in an ATV crash at the age of 36.
8
John Shuman, a native of Cross Lanes, WV, Shane’s cornea recipient, also shared his emotional story about receiving the gift of sight. Attendees also heard from Dunbar, WV, resident Vicky Keene. Because of advanced chronic obstructive pulmonary disease (COPD), she is waiting for a double lung transplant. Prior to each ceremony, donor family members pinned quilt squares in remembrance of their loved ones. The squares will become a new memorial quilt that will travel to events in western PA and WV. The events in Pittsburgh and Charleston were capped off by balloon and butterfly releases.
9
CORE Community Celebrates Contributions of the Late Dr. Arffa “Dr. Arffa’s leadership and vision ensured that CORE was using the very latest technology to improve corneal recovery and transplantation. In doing so, he enabled CORE to give the gift of sight to thousands of people, which is now an integral part of his legacy.” CORE staff, corneal transplant surgeons, and Dr. Arffa’s family and friends honored the pioneering surgeon and witnessed as the CORE Eye Bank was dedicated in his honor. Several personal tributes were also made to Dr. Arffa’s lasting legacy.
On March 11, a very special event was held at CORE to celebrate the life and legacy of Dr. Robert Arffa, who was CORE’s medical director for the eye division at the time of his death in a plane crash in 2016. For nearly 30 years, Dr. Arffa was a pioneer in corneal transplantation. Since 1992, he served as the medical director of the Eye Bank of Western Pennsylvania, and he continued in that role when the Eye Bank merged with CORE in 1996. “Every individual who works with CORE is, in some way, responsible for forever changing someone’s life,” CORE President and CEO Susan Stuart said at the event.
10
“The fear of losing my sight was real. Dr. Arffa got me through this rough time,” reminisced CORE volunteer Jill Dillman-Stull, RN, a flight nurse for Conemaugh MedStar, who, because of a successful cornea transplant, was able to return to work. “With every patient I treat on the helicopter, I am showing my gratitude and appreciation. I feel blessed to be able to do my job, for it is my way of giving back as you have. There is nothing more truly loving than the gift of life through donation.”
CORE Donor Family and Recipient Share Emotional Meeting on TV In celebration of National Donate Life Month in April, CORE donor parents Paul and Laura Gillum traveled from Pittsburgh to Los Angeles, where they were able to meet the recipient of their son’s heart, 2-year-old Lennon, and his mom, Jessica, on the television show THE REAL, a daily, one-hour Emmy® nominated talk show in national syndication, with a rebroadcast on cable network BET.
Paul and Laura’s son, Dean “Burrito” Gillum, 2, passed away tragically in August 2015 after he hit his head and drowned in the family’s backyard swimming pool. His mother, a U.S. Airforce veteran and a paramedic, has channeled her grief into a mission to train adults and children in CPR. The couple founded “Breathing for Burrito,” and teach free CPR classes in and around Pittsburgh.
“We’ve added these fantastic people to our family.” Laura said right after the meeting. “We are so absolutely blessed to see Lennon grow and to know how loved he is, by his entire family, We are so lucky!”
On camera, Laura and Paul were able to hear their son’s heart beating. The families have stayed in touch since the show, and according to the Gillums, they have been very much helped in their grief journey by having the opportunity to meet Lennon and see for themselves the heroic gift that their son was able to give. Lennon is a happy and healthy toddler.
Before the meeting, Jessica posted this message on her Facebook page: “Just a few more days until we meet the family who chose life for our pea, while enduring the worst thing a parent could ever deal with. We are so absolutely overwhelmed with gratitude, and cannot wait to be able to thank them in person.”
11
CORE Expands Donor Family Services CORE bolstered its commitment to providing outstanding care for donor families by adding two full-time staff members to the Donor Family Services Department in 2017. “It allows us to spend more time supporting our donor families,” Brian Bricker, director of clinical operations said. “We’re now able to respond to their needs quicker and more effectively.” The expansion, which included the addition of donor family support coordinators, also enables more donor family support staff to be on-site at hospitals to talk to families about donation. CORE was proud to implement the 13-month bereavement program in its entirety in 2017, which includes ongoing correspondence with donor families and an array of comprehensive resources for support. “Now with this formal, robust program, we were able to support families at full force in 2017,” Bricker said.
12
“
Donor families have always been at the heart of our purpose at CORE,” said Bricker. “Without them, we wouldn’t be able to do what we do, so an important part of our mission is to support them.
”
CORE Thanks2You Program Reaches New Milestone
Dear Donor Family, Hi. I would like to say thank you so much for what your family has gave me. I am the recipient of a partial bone condyle. I am a 20 year old male that injured my knee playing football and it has been damaged ever since. This was my 3rd surgery in 3 years on my knee and has been life changing for me. I am writing this to say thanks for making my life
Started in 2015, CORE’s Thanks2You program encourages tissue recipients to thank their donor families through letters and cards, and then also facilitates the exchanges.
significantly less painful and changing it for the better.
The program reached an impressive milestone in November 2017 when it celebrated more than 500 letters exchanged.
Austin
Thank you for your family’s generosity. I would not be able go down a flight of stairs let alone live a fulfilling life without your family’s help. I cannot say thank you enough for changing my life and the way I live every day. Thank you.
The milestone represents important growth for the program and supports increased communication between recipients and donor families. “The year 2017 marked a definite turning point in the program,” said Lucy Dickson, recovery coordinator. “We went full force with it – and in turn, saw way more involvement.” Dickson and fellow recovery coordinator Melissa Davis, who together founded CORE’s initiative, credit the milestone to two factors: incorporating professional service liaisons into the program at the ground level within the hospitals, and taking steps to include funeral directors and coroners during the referral process.
“
When we get a great letter, it can really motivate the team,” Recovery Coordinator Melissa Davis said. “It reminds us all about how we’re actually helping through donation.
” 13
Play It Forward New Campaign Helps Spread the Word about Organ Donation Throughout 2017, CORE joined forces with the Citrone Family Foundation and more than 30 Pittsburgh-area organizations, including the University of Pittsburgh, Carnegie Mellon University, UPMC and Highmark, for a city-wide organ donation awareness campaign, Play It Forward Pittsburgh. In December, the initiative culminated with a large-scale media campaign featuring famous Pittsburghers such as Ben Roethlisberger and Joe Manganiello, who declared their support for organ donation, under the title “ORGAN DONATION NATION.” The campaign was created and spearheaded by the Citrone Family Foundation. CORE served in an advisory role during the planning phases, and once the campaign was off the ground, CORE assisted with manpower at a multitude of local events, as well as supplied the faces of transplant for media campaigns.
14
As part of the Play It Forward Pittsburgh campaign’s peak in December, the Citrones pledged $2 million to Children’s Hospital of Pittsburgh of UPMC and issued a $1 million matching challenge they hope can help launch a network to improve pediatric transplant outcomes throughout the world.
Hospital Challenges Ignite Enthusiasm Each year, CORE hosts its hospital challenges to inspire healthcare professionals to advocate for donation and increase the number of lives affected. Together with the Hospital & Healthsystem Association of Pennsylvania (HAP), Donate Life Pennsylvania, Donate Life West Virginia and the West Virginia Hospital Association, the hospital challenges award points to hospitals based on the number of awareness and designation activities hosted at their facilities. This year, hospitals across western Pennsylvania and West Virginia stepped up to the challenge in record numbers.
Challenge Accepted CORE hosted luncheons to celebrate the hospital winners and the healthcare professionals who lead them in both Pennsylvania and West Virginia.
CORE hosted an event to honor participants in the 2017 HAP Challenge Luncheon at the Fox Chapel Country Club on December 13.
The 2017 Donate Life West Virginia Hospital Challenge Luncheon took place earlier in the year at Stonewall Resort on October 10.
15
Western Pennsylvania In 2017, a new designation level – titanium – was added to the HAP Challenge. Pennsylvania is the first and only state to offer this designation. To reach the titanium level, hospitals engaged in unprecedented levels of clinical and community activities, aimed at encouraging new donor signups.
100
hospitals in 2017
592
new organ donor designations at UPMC* * Collaboratively between CORE and Gift of Life Donor Program
Top Health Systems
First Place UPMC Second Place Conemaugh Health System Third Place Allegheny Health Network
Top Hospitals First Place UPMC Presbyterian Second Place Conemaugh Memorial Medical Center Third Place Allegheny General Hospital
Winners by Level Titanium Platinum Gold Silver Bronze 16
5 29 3 4 1
West Virginia More hospitals participated in the West Virginia Hospital Challenge than ever before in 2017 – a total of 34. The record number represents the steady increase in participation since the West Virginia challenge launched three years ago.
Growth by Year 2015 2016 2017
8 hospitals 24 hospitals 34 hospitals
Overall Winner WVU Medicine United Hospital Center
Top Hospitals First Place WVU Medicine United Hospital Center Second Place Ohio Valley Medical Center Third Place Logan Regional Medical Center
Winners by Level Platinum Gold Silver Bronze
13 7 12 6 17
CORE Celebrates Partnership With DMV For one week in September, CORE, our organ procurement organization partner at Gift of Life Donor program in Philadephia and Donate Life America (DLA) said “thank you” to departments of motor vehicles (DMVs), administrators and licensing partners across the country for their partnership and commitment to asking each customer to register as an organ, tissue and cornea donor. Joining in this celebration was the American Association of Motor Vehicle Administrators (AAMVA), a nonprofit organization developing model programs in motor vehicle administration, law enforcement and highway safety. In 2017, Kurt J. Myers, deputy secretary, Pennsylvania Department of Transportation, Driver and Vehicle Services, was named chair of the AAMVA International Board of Directors.
18
“
PennDOT is pleased to work with our partners in CORE, Gift of Life and at the Department of Health in helping to promote organ and tissue donation in Pennsylvania,” said Myers. “We thank our partners for recognizing these efforts and look forward to many more years of collaboration.
”
19
CORE Adds New Positions in Line With Baldrige Journey As CORE continues to innovate based on the Baldrige Excellence Framework, the organization has strengthened its commitment to excellence by adding a position devoted solely to cultivating a culture of innovation. In December 2017, CORE introduced the director of innovation and process improvement position, and welcomed innovation veteran Michael Gerusky to fill the role.
“
CORE has always been one of the pioneers at the forefront of the transplant field,” said Chris Duckett, director of human resources. “The addition of this position shows we want to stay there.
“ ”
Duckett said the organization sought to find someone with previous experience in continuous improvement processes, as well as someone with a Six Sigma Black Belt. Gerusky fit the bill. The new position is responsible for developing and implementing a process and quality improvement plan in accordance with the mission and strategic goals of the organization, federal and state laws and regulations, and accreditation standards.
20
The organ donation landscape is constantly changing,” Duckett said. “We’re in the midst of change in both technologies and processes, so it makes sense for us as an organization to have someone whose role it is to constantly improve and make us a stronger organization long-term.
”
Supporting Gerusky in his role is Nick Yakubisin, who was recently appointed to the newly created position of program manager for process improvement.
Volunteer Program Honored With Pinnacle Award CORE was honored with the 2017 Donate Life Pinnacle Award, Volunteer Program at the DLA annual conference in Richmond, VA in October. The Pinnacle Awards recognize programs successful in inspiring more people to register as organ, tissue and cornea donors, and establishing donation as a cultural norm. CORE received the award in recognition of a new, comprehensive, innovative and ongoing volunteer education program that ensures that all volunteers are properly trained for, as well as fulfilled by, their work.
Since the improved education programs were put in place in 2016, the CORE volunteer workforce has grown 21 percent.
Specifically, the new and innovative online training video for new volunteers fixed the problem of losing interested volunteers because of a long training process. The comprehensive and engaging annual kick-off event makes volunteering fun and attractive. The continuing monthly education keeps volunteers “in the know” with the latest trends. The specialized training programs make the volunteer experience more rewarding by matching volunteers with their strengths. And because volunteers are offered so many chances to give their feedback, the education program can adjust accordingly and thus continue to be effective.
The goals and objectives of CORE’s new volunteer education program were simple: overall growth of the volunteer program, greater engagement by the volunteer workforce, and increased retention of active volunteers.
21
CIO Bruno Mastroianni named Nonprofit CIO of the Year CORE Chief Information Officer (CIO) Bruno Mastroianni was honored as the 2017 Pittsburgh Technology Council’s Nonprofit CIO of the Year. “Pittsburgh is home to some of the brightest tech minds in the world, leading technology strategies across companies of all sizes and industries,” said PTC President and CEO Audrey Russo. “It is important to take a night to celebrate their accomplishments, innovation and leadership. Congratulations to the finalists and winners.” At an awards ceremony, the Pittsburgh Technology Council (PTC) and the Greater Pittsburgh CIO Group honored the region’s top technology executives who work in industry, nonprofit, and academia for their innovation and creativity in planning and deploying their enterprise systems, future technology goals, management philosophy, and service to industry and the community. At the awards banquet, CIOs and chief information security officers (CISOs) were recognized in seven categories according to company size, along with an education and nonprofit category. Each year, the awards also recognize a CIO of Choice to honor the lifetime achievements of a regional CIO.
22
Each of the 27 finalists was judged by a committee of members of the Pittsburgh Technology Council and the Greater Pittsburgh CIO Group. Mastroianni is nationally recognized as a leader in his role across organ procurement organizations, and he shares his expertise across the industry. Prior to joining CORE, Mastroianni spent more than 25 years in informational technology leadership roles, primarily in healthcare and higher education.
CORE Breaks Record for Tissue Donations CORE received a record number of tissue donations in 2017, showing a significant 12-percent increase from 2016. Brian Bricker, director of clinical operations, attributes the increase to a combination of carefully executed protocol along with an emphasis on demonstrating empathy to potential donor families. “We’ve really worked to have our staff trained to support families when approaching them about tissue donation,” Bricker said. “We’ve emphasized that it takes compassion to connect with a family.”
Tissue Donors 2016 1,029 2017
1,151 (
12%)
Making It Count
22 4 Nu m do ber no rs i of or g n2 01 an 7
79 %
Pe r of centa cor ge tra n nsp eas in 2 l 01 anted 7
63 3 Nu m tra ber nsp o (4.7 lan f org 20 % de ted i ans 1 n sec 6; ho creas 201 7 e tra ond-m weve from n r his splan ost o , still tor the t r ed g y) in C ans OR E
1,1 51 Re c nu ord mb of t er do issue n in 2 ors 01 7
10 .1 %
Pe r inc centa rea g in t se e i do ssue n fro ors m 20 to 1 2 (+1 017 6 tiss 16 do ue no rs)
23
24
Financials
3%
3% 4% 4% 4%
5%
41%
8%
6%
22%
Organ Acquisition Fees – 41% Salaries and Contracted Services – 22% Pass Through Charter Service Expenses – 6%
Office Expenses and Equipment – 4% Education – 4% Staff Expenses – 4%
Employee Benefits – 8%
Legal, Professional and Insurance Expenses – 3%
Medical Supplies – 5%
Occupancy Expenses – 3%
25
Leadership and Management
Lindsay Petrosky, Secretary Member Jackson Kelly PLLC Kevin Marpoe, Treasurer Director, Investor Management HIGHMARK Health Services Michael Baker Indiana County Commissioner Andrew Carter President & CEO The Hospital & Healthsystem Association of PA James Garraux Attorney Thomas Hunter Associate State Director of Communications AARP West Virginia Joseph Letnaunchyn President & CEO West Virginia Hospital Association Thomas Meacham Retired; Donor Family Representative Representative Joseph Petrarca PA State Representative PA House of Representatives Richard L. Simmons, MD, PhD Medical Director UPMC Health System
Roheena Kamyar, MD Back-up Medical Director, CORE Eye Bank Ex-Officio
William Morris Transplant Center Administrator Allegheny General Hospital Valliammai Muthappan, MD Corneal Surgeon Sightline Ophthalmic Associates
Joseph Africa, MD Transplant Surgeon Charleston Area Medical Center Stephen H. Bailey, MD Transplant Surgeon Allegheny General Hospital Scott Bottenfield Tissue Bank Representative Thomas Cacciarelli, MD Transplant Surgeon VA Pittsburgh Healthcare System Paula Eicker Director, Transplant Services Children’s Hospital of Pittsburgh of UPMC David Gabauer Beaver County Coroner/Funeral Director Lindsey Herlinger Transplant Administrator VA Pittsburgh Healthcare System
William R. Wagner, PhD Director McGowan Institute for Regenerative Medicine
Jennifer Knight, MD ICU/ER Member Associate Program Director General Surgery Residency Program WVU
Christopher Yanakos Executive VP Work Well Physical Medicine, Inc.
Roberto Lopez-Solis, MD Transplant Surgeon UPMC
Reshma Paranjpe, MD Cornea, External Disease & Refractive Surgery Allegheny General Hospital Fred Peterson Voluntary Health Association Representative Diane Pidwell, PhD Histocompatibility Representative Allegheny General Hospital Richard Plowey, MD, MPH Advanced Pain Medicine Susan Umerley Transplant Program Administrator UPMC Thomas E. Starzl Transplantation Institute Gina Velar Organ Donor Family Representative Travis Watson Transplant Program Administrator UPMC Thomas E. Starzl Transplantation Institute
.
Glen Martin Associate Administrator Charleston Area Medical Center
. . . .
.
.
. . . . . . . . .
. .
. . . . . . . . .
. . .
. . .
. .
Ex Officio Members Hall T. McGee, MD – Medical Director, Eye Banking – Ex Officio Matthew R. Morrell, MD – Chief Medical Director – Ex Officio Susan A. Stuart – President/CEO – Ex Officio
Douglas Mitchell Vice President & CNO WVU Medicine West Virginia University Hospitals Rudy Molnar Public Representative
William R. Wagner, PhD Director McGowan Institute for Regenerative Medicine Ex-Officio
.
26
Susan A. Stuart, President/CEO CORE Ex-Officio
.
.
Janet James, Esq., Vice Chair Assistant Attorney General & Counsel West Virginia Attorney General Office
Matthew R. Morrell, MD, Chair Ex-Officio
George Mazariegos, MD Transplant Surgeon Children’s Hospital of Pittsburgh of UPMC
. . . . . . .
James Kelly, Chair Retired; Healthcare Executive
2017 ADVISORY BOARD DIRECTORS
.
2017 BOARD OF DIRECTORS
CORE Honors Life of Devoted Advocate It was with great sadness that CORE said goodbye to our longtime friend and devoted advocate Rudy Molnar, who passed away peacefully in October due to kidney failure. At the time of his passing, Rudy was at home and surrounded by his loved ones, including his loving partner Kathy Jacobs, a former nurse, who he grew close to while recuperating from his first transplant. Thanks to the generosity of two organ donors, Rudy lived for 28 years after receiving two heart transplants, first in 1989 and again in 2005. Rudy was at one time a CORE board member, an active member of the Transplant Recipient International Organization (TRIO) and a Team Alleghenies Transplant athlete. Rudy found much purpose and joy in spreading awareness, especially in the moments he spent at Pittsburgh transplant centers encouraging patients awaiting transplants to keep holding on.
He worked tirelessly with us to promote organ donation awareness,� CORE President and CEO Susan Stuart remembers. “He was like an anchor.
27
28
Bedford, PA Liver Recipient
Looking at him today, you’d never know that Chance was once so sick that doctors were unsure if he’d survive. At only 7 years old, he was diagnosed with liver cancer and endured months of treatment that left him bedridden. That’s when doctors at Children’s Hospital of Pittsburgh of UPMC changed course and listed him for transplant. Within only a few months, Chance received just that – a “chance” at a normal, healthy life through liver transplant. “Being sick definitely changed my outlook on life, because I was given a second chance, and I’m grateful that I’m still here,” Chance says. Cancer-free, young Chance knew to be thankful for his renewed good health. And since then, he’s done everything possible to maintain that well-being, through regular workouts at the gym his parents own and by making healthy eating a priority. Today, he’s not only a varsity soccer and baseball star, he’s also a champion for organ donation. This April, Chance marked the 10th anniversary of his transplant – his own second chance.
....................................................................................
CHANCE DULL, 17
VICKY KEENE
Charleston, WV Waiting for a Lung Transplant Vicky Keene has been a registered organ donor for as long as she can remember. But it wasn’t until a few years ago that donation became personal for her. That’s when she was diagnosed with chronic obstructive pulmonary disease (COPD), and doctors told her that a lung transplant was the only long-term solution. Vicky, determined to make the best of a distressing situation, chose to use her diagnosis as an opportunity to help those around her. As executive director of MULTIFEST, a well-known West Virginia event that brings together cultural and ethnic communities through art and music, Vicky used the event as a platform to create awareness about the need for more minority organ, tissue and cornea donors as part of Donate Life America’s 2017 National Minority Donor Awareness Week. “Death is not an option for me – life is. I have too much to live for,” Vicky, who’s now hospital-bound and on a constant stream of oxygen at UPMC Presbyterian Hospital in Pittsburgh, says. “I have a husband, children and grandchildren, and they need me.”
29
Eleanor, WV Donor Mother
Nancy Jividen’s son, Shane, loved to ride his motorcycle. He was an avid outdoorsman and served as a volunteer firefighter in his West Virginia community for more than 20 years. She says he would help anyone in need. That’s why when Shane passed away tragically in an ATV crash, she wasn’t surprised to learn her son was a registered organ donor – and she was inspired to follow his example. “They brought me an 8-by-10 piece of paper showing he was an organ donor,” she said. “And I said, ‘Well Shane, I’m going to be an organ donor, too.’” Months after Shane’s passing, Nancy received a letter from the man who regained his sight through Shane’s donated corneas. By chance, and as a lesson that a donor’s generosity could heal someone who’s not a stranger, the recipient turned out to be one of Nancy’s coworkers at Walmart: John Shuman. Today, the pair share a close bond that extends far beyond their workplace.
30
....................................................................................
NANCY JIVIDEN
PATTI FOUNTAIN Pittsburgh, PA Donor Mother
DeSean Fountain was only 14 years old when he was shot and killed on his way home from school. Grief-stricken but resolute, DeSean’s mother, Patti, was determined that her son’s death be defined by goodness – not by the senseless act of violence that took his life. That’s why she said yes to organ donation. DeSean donated his heart, liver and both kidneys, saving the lives of two children and two adults. “My son’s purpose in life was served when God took him home,” she said. Today, Patti is comforted by the fact that he lives on through donation. “I couldn’t think of anything better to do. That was him giving his all leaving this world. And that was real important to him and to us.”
Charleston, WV Kidney Recipient
Cybele Boehm has lived with kidney disease nearly all her life. She was born with a rare genetic condition that destroys a person’s kidneys. Even with the illness, Cybele was able to live a full life as a wife and mother, with a rewarding job in education. But in 2007, life changed for Cybele. Doctors told her that her disease had progressed to the point where she would need a kidney transplant to survive. More than a year after being placed on the national transplant waiting list, Cybele received the call that a kidney was available. Since her transplant, Cybele has been able to appreciate and enjoy life more than ever before. Her struggle isn’t over, however. Recently, her daughter, Isabella, was diagnosed with the same rare kidney disease and will herself face transplant down the road. For now, Cybele is focused on honoring the person who gave her a second chance at life by encouraging others to register as organ donors. “It’s hard to make that decision, but if people make it, it’s life-changing,” she said. “It’s a life-saving decision for someone else. I’m an example of that.”
....................................................................................
CYBELE BOEHM
CHRIS YANAKOS Pittsburgh, PA Liver Donor
Chris Yanakos had always been an overachiever. He excelled at school and business, and sports came naturally to him. Even when his mother became sick, he took the role of “good son” to the next level. Because of a hereditary liver disease, Chris’s mother, Susan, needed a liver transplant to survive. Right away, Chris volunteered to donate a portion of his own liver to save his mother’s life. Even today, more than a decade after the life-saving surgery, Chris shows more than the average amount of humility when sharing his transplant story – refusing any praise for his part; offering it only to his mom. “I have to give an unbelievable amount of credit to my mom, just based on how tough she is,” he said. “Without her fighting, there is no way we’d get through it. I absolutely recommend to everyone that they should be an organ donor. If the opportunity arises, they should consider living donation, but at the very least, everyone should be an organ donor on their license.” True to his go-getter nature, post-transplant life didn’t slow down for Chris. He picked up cycling as a doctor-approved exercise immediately after the surgery, and now he’s one of the top amateur elite cyclists in the country. Not surprisingly, Chris didn’t just become a volunteer for CORE – he’s now a member of CORE’s Board of Directors.
31
Bentleyville, PA Kidney Recipient Diana Bell recently danced with her son, Evan, at his wedding. The ceremonial dance is a momentous occasion for any mother and son, but for Diana, the moment was especially sweet, because it was one she wasn’t sure she’d ever live to experience. Diana was diagnosed with kidney disease when she was a child. As a young teenager, she wasn’t able to participate in after-school activities or sleepovers at her friends’ houses. Instead, she spent her free time at dialysis. It wore her down, she remembers. But when she was 15, a kidney transplant – through the generosity of an organ donor – changed her life for the better. Since then, Diana has received two more kidney transplants – one that would last her 18 years and see her through the birth of her son, and another that keeps her healthy today and made it possible for her to dance with Evan on his big day.
32
....................................................................................
DIANA BELL
JAMESON McKAIN McDonald, PA Heart Recipient
During a routine sonogram, Danielle and Patrik McKain were told that their son was going to be born with only half a heart. Devastated but hopeful, the couple prepared for their newborn son to undergo three open heart surgeries to attempt to repair the defect, known as hypoplastic left heart syndrome (HLHS). But when their son, Jameson, was born four months after his diagnosis, the needed set of surgeries did not go off as planned. The only treatment option left was a heart transplant. Merely three months after being listed, Jameson received the heart he needed to live. Today, six years later, Jameson is an active first-grader who loves playing baseball and shows no signs of slowing down. Although the rough start that her son endured is behind them, Danielle can never forget the nearly two years that Jameson spent in the hospital. That’s why the McKain family, along with many dedicated friends and volunteers, launched Jameson’s Army, a nonprofit organization dedicated to helping families of children in the cardiac care unit at Children’s Hospital of Pittsburgh of UPMC. “We had no idea about the impact of organ donation before Jameson’s transplant,” Danielle said. “Now, a big part of our lives is organ donation advocacy.”
before choosing law enforcement. And according to his parents, Max and Sue, it was then that Paul found his calling. “Paul was always happy, but when he became a police officer, we never saw anyone as happy as him,” his mother Sue said. “He’d click his heels to go to work. We’d say, ‘He’s nuts!’”
MAX & SUE SCIULLO Pittsburgh, PA Donor Parents
Growing up, Paul Sciullo didn’t know what he wanted to do as an adult, just that he wanted to make a difference. After graduating from Duquesne University, he tried a handful of different professions
In the early morning hours of April 4, 2009, Paul tragically lost his life in the line of duty, alongside two of his fellow officers. Paul received the Pittsburgh Police Medal of Valor and the Purple Heart for his service and sacrifice. And since his death, numerous scholarships, awards and philanthropic fundraisers have been established in his name. But it was the difference he made as a tissue donor, offering healing to 75 people after his death, that eases his parents’ grief. “To be able to give life to someone through our death; it’s just amazing,” Sue said. “And it goes on and on and on. It’s really, really, quite wonderful.”
33
PITTSBURGH 204 Sigma Drive Pittsburgh, PA 15238 CHARLESTON 501 Morris Street Charleston, WV 25325 www.core.org 800-DONORS-7 (800-366-6777)