Table of conTenTs

Message from the CEO

What’s New

Feature Story

Did You Know

Hospital Development

Multicultural Outreach Program

Eye Bank

Community Outreach

Upcoming Events

A Donate Life Organization

mission

The Center for Organ

Recovery & Education

(CORE) is a non-profit

organization dedicated

to promoting donation,

education, and research

for the purpose of

saving and improving

the quality of life

through organ,

tissue, and cornea

transplantation.

message from The ceo susan stuart, center for organ recovery & education ceo

With Thanksgiving right around the corner, many of us are preparing for the holiday and looking forward to spending time with our friends and family. For those of us at CORE, fall also marks a time when we give thanks in another way – by showing our gratitude to those who make life-saving organ transplants possible.

On Oct. 12, CORE held our third annual Special Place ceremony at the beautiful Clay Center for the Arts & Sciences in Charleston, W.Va. to honor the families of West Virginia-based organ, tissue and cornea donors who saved or improved the lives of transplant patients in 2013. This heartwarming event reflects on the lives our donors lived, as well as the lives our donors saved.

This year’s ceremony included remarks from a heart transplant recipient and a physician whose grandson was an organ donor, along with musical performances by a soloist, a harpist and a bagpipe player. Those in attendance were treated to inspiring stories from donor families who honored the legacy of donors, as well kind words from recipients who shared how organ donation has touched their lives. For the first time, this year’s ceremony featured a butterfly release, reminding us of both the fragility of human life and the transformative capabilities of organ donation.

Thank you to all who participated in this wonderful event, and let it serve as a reminder to us to remain continually thankful for the selfless act of organ donation. I’d also like to thank all of the hospitals that participated in the 2014 Donation Collaborative: Back to the Future of Donation.

Attendees were truly blessed to witness the emotional bond between recipients and donor families during the heartfelt meeting of recipient Dalton Igoe and his donor’s mother and siblings. It was an experience to remember and emphasizes the important role that each of us play in the donation process.

OctOber 2014

You are invited to the heart Transplant support group meeting!

saturday, november 15, 2014Panera bread

3401 Blvd of Allies - Pittsburgh, PA 15213

The meetings are open discussion—bring your personal victories to share, your concerns, and your questions. If you wish to attend please contact

Tom Meshanko at t.meshanko@verizon.net.

The Heart Transplant Support Group’s goal is to provide support to Pre-Transplant and Post-Transplant individuals in the physical and emotional areas through discussion. The information shared is personal and should be kept private within the support group.

sTaTisTicsNational Waiting List: 124,045

CORE Waiting List: 2,806

• Every 10 minutes another name is added to the waiting list.

• On average, 18 people will pass each day waiting for their life saving transplant.

• 90% of Americans say they support donation, yet only 30% actually know the essential steps to take to be a donor.

• One organ and tissue donor can save 8 lives and enhance the lives of more than 50 individuals.

WhaT’s neW core sponsors Donate life float floragraph and float Walker

For more than a decade, the Donate Life Float in the Rose Bowl Parade has honored organ, tissue and cornea donors. The 2015 Donate Life Rose Parade Float will continue that tradition. As part of the float’s theme, “The Never-Ending Story,” 72 floragraph portraits of deceased donors will adorn the float, including that of Pittsburgh Police Officer Paul Sciullo, who was killed in the line of duty in 2009. Walking alongside the float will be 12 living organ donors, including JoAnne Burka of Charleston, WV who will represent CORE.

Paul J. sciullo ll, PiTTsburgh, Pa - Tissue DonorPaul J. Sciullo II was born on November 26, 1972. The youngest of three children, Paul grew up in the community of Bloomfield in Pittsburgh, Pa. Paul attended St. Joseph grade school, and went onto Central Catholic High School where he played golf and ice hockey. Paul was the captain of the Central Catholic Viking ice hockey team. He attended Duquesne University where he played golf and ice hockey, having received scholarships for academics and golf. While at Duquesne, Paul was on the Dean’s List and a member of the Alpha Phi Delta Fraternity. He received his Bachelor’s Degree in Psychology.

Paul tried different professions, but always felt that he wanted to make a difference in the work that he was doing. This led him to becoming a Pittsburgh Police officer. He was also a registered organ donor. Paul felt that he could truly make a difference with both decisions.

Paul was tragically killed in the line of duty on April 4, 2009. Paul received the highest honor presented by the Pittsburgh Bureau of Police, the Medal of Valor and the Purple Heart for his service and sacrifice. Numerous scholarships, awards and philanthropic fundraisers have been established in his name. Additionally, as a tissue donor, Paul has truly has made a difference.

Joanne burka, charlesTon, WV - liVing Donor JoAnne Burka and Dawn Gallo had been friends since junior high school. It wasn’t until their senior year of high school when Dawn began her struggle with the autoimmune disease, Lupus, which would continue for the rest of her life. When Dawn’s struggles ended with her peaceful passing in December 2011, JoAnne decided to give the gift of life in her friend’s honor. JoAnne contacted her local hospital’s Kidney Exchange program to begin the donation process. After being redirected to the CORE, JoAnne was quickly matched with a recipient under the Living Donor program and set a date for surgery in Pittsburgh’s Allegheny General Hospital. JoAnne’s twin sister, Pat, accompanied her to Pittsburgh, for a successful three hour surgery, later that day, an elderly Maryland woman suffering from Polycystic Kidney Disease for years received JoAnne’s kidney. JoAnne had to give up running

and heavy lifting for one month, but, due to her swift recovery, was able to continue running again after four weeks. She was able to compete in the Charleston Distance Run relay running 12 miles in only four months post-surgery.

JoAnne’s life is back to normal, her only reminder of her donation is the scar on her stomach, which, she says, is a blessing. When life gets crazy, JoAnne looks at the scar and remembers what really matters: that she was able to save a life. God gives us a spare kidney, why not help others in need if you can?

JoAnne now volunteers for CORE and tells her story to inspire others to consider registering to become an organ donor on their driver’s license. By donating her kidney, JoAnne has given the gift of life and inspired countless others to become involved with organ donation and kidney health.

sTeP afrika - sTePPin inTo naTional Donor sabbaTh celebraTion

feaTure sTorY mary margaret george: babysitting job turned into much more

At the beginning of this year, I took a job caring for Vittoria Marano King, who has several nicknames such as TT or T-bone, but who is best known as Tori. I’ll admit I took the job thinking it would be temporary. I was almost 25 and figured it was time to get a real job. This would be a way to make money until then, I thought. Boy, was I wrong. This job turned out to be one of the most invaluable experiences I’ve ever had.

At 10 weeks old, Tori was diagnosed with a rare, chronic disease of the liver called biliary atresia, caused when an unknown virus attacked the bile ducts of her liver and caused them to stop working. A week later, Tori underwent a Kasai procedure, a major surgery (her first of many) in which the small intestine is connected to the liver to help drain bile. The procedure was only partially successful, which meant Tori was going to have to get a liver transplant, and sooner rather than later.

I started working for the family at the end of January. On Feb. 1, the Friday of my first week, Tori had a fever and we were told to monitor it while her doctors decided what to do. Her fever kept creeping up, so they decided she needed to be admitted to the hospital. This was her 17th admission to the hospital. That Friday also happened to be Tori’s first birthday.

Since then, it’s been a whirlwind of doctor’s appointments, clinic visits, fevers, overnight stays and more surgeries. She has been admitted to the hospital more than 30 times. She had endoscopies every three weeks to treat esophageal varices, enlarged veins in her esophagus that had developed as an effect of her dying liver, a dangerous complication of cirrhosis. It is dangerous because if one were to rupture, the blood loss would be life threatening. On May 8, during a trip home from a checkup with Tori, her mom and sister, one did rupture. This was the scariest moment of my life. After the rupture, Tori’s doctors decided it would be best for Tori to be close while she waited for a transplant. So in mid-May, I moved with Tori and her family to await a new liver.

On July 15, the call finally came and Tori received a liver transplant. Unfortunately, five days later, there were some complications with the arteries of the new liver, and it was decided Tori needed yet another transplant. She was placed at the top of the national list, and luckily got a second liver the very next day. Tori, who was 17 months at the time, had two liver transplants within eight days. Things went better with the second surgery and this liver, as her doctors said, is “beautiful.” Tori and her family still have a long road ahead. It’s a tough journey, but luckily, Tori has incredibly strong parents, Andrea and Bill, a sweet big sister, Ella, and loving family and friends all over the country. A favorite quote of Tori’s mom is, “We may not have it all together, but together we have it all.” This life of theirs is a rollercoaster. They’ve been through more than most of us may ever have to deal with, but they take it day by day, together, as a family.

There was one day in March that will stick with me forever. Tori had a fever and I could tell she was feeling pretty crummy and she wasn’t her happy, normal self. We were cuddled up watching TV together, and as she started to fall asleep on my chest, one small silent tear rolled down her cheek. That one little tear put so much into perspective for me. I realized the things I complained about and thought were bad in my life, were so insignificant. Here’s this little, helpless baby, who is going through more of a struggle than I may ever have to deal with in my entire life, and she is only one year old.

Despite what she has to deal with every day; hospital visits, blood draws, feeding tubes, fevers, and pain, Tori is the most delightful, joyous, sweet, funny, loving little human being I have ever been around. I have no idea what Tori feels day to day dealing with this disease, and probably will never know, because hopefully she won’t remember all of this. She smiles, plays, eats, walks, laughs, and lives her life like nothing is wrong. Going into this adventure, I would have never thought a baby would be able to teach me anything. But she has, and I know her infectious personality will continue to touch each person that has the joy of meeting her.

Tori may never know what she has done for me, but she has changed my life. I find myself being more positive and complaining less. I count my blessings more, a big one of those being Tori and her sister Ella. I started volunteering with the Center for Organ Recovery and Education where our goal is to get people to sign up to be organ donors (Sign up. You can save lives like Tori’s.). I have also decided to go back to school to obtain a nursing degree so I can someday take care of babies like Tori.

There are a lot of things I am thankful for, but this year I add to my list: my little buddy, Tori, and her family.

DiD You knoW?

There is no “right age” for organ donation! Organs may be donated from someone as young as a newborn. Conversely, there is no age limit for organ donation. In fact, about 30% of organ donors every year are over the age of 50.

Tori and Mary Margaret on National Blue & Green Day 2013.

coPing WiTh grief During The holiDaYsIt takes courage to grieve and to honor the pain we carry - particularly during the holiday season when our sadness is intensified and the world is celebrating around us. Please join us in listening and talking with others as they share their stories and how they continue to cope during the holiday seasons.

Thursday, november 6, 20147 to 9 pm

Please RSVP by November 4, 2014204 Sigma Drive

Pittsburgh, PA 15238

*This program will focus on the loss of a child.

To RSVP or for questions please contact: Michelle Christenson at

(412)963-3550 or mchristenson@core.org

saturday, november 15, 20141 to 3:30 pm

Please RSVP by November 10, 2014Christ Church United Methodist

1221 Quarrier Street Charleston, WV 25302

To RSVP or for questions please contact: Lynda Staylor at

(412)963-3550 or lstaylor@core.org

TransformaTion TuesDaY on facebook Every Tuesday, CORE’s Facebook Page has been featuring an inspiring story throughout CORE’s service area. #TransformationTuesday allows individuals to share stories of how organ, tissue and cornea donation has saved, transformed and enhances lives.

If you have a #TransformationTuesday story to share with us and are a resident of CORE’s service area, please contact Colleen Sullivan at csullivan@core.org for information.

DiD You knoW special Place honors West Virginia Donors

On October 12, 2014, over 200 donor family members attended the 3rd annual Special Place at the Clay Center in Charleston, WV. Families of donors from the previous year were invited to attend this event to say goodbye to their loved one and to celebrate their lives as well as the gift they gave to someone waiting for a lifesaving/improving organ, tissue or cornea donation.

Janet James, Esq., CORE board member, shared the importance of organ, tissue & cornea donation and how it impacts the lives of others. She also expressed how thankful those who receive those gifts are and how the decision for their loved one to become a donor helps CORE save many lives each year.

This annual ceremony provides donor families the opportunity to see how organ, tissue and cornea donation changes lives by listening to guest speakers, who have experienced receiving

the gift of life or the loss of a loved one who was able to save someone else with their donation. It also offers support by other families who are attending the event in honor of their loved one.

Susan Stuart, CEO shared that in 2013, West Virginia had 63 organ donors, 221 tissue donors and 228 cornea donors. All of these donations offered a lifesaving or life improving option for those on the waiting list. The ceremony is filled with lovely music and words of inspiration concluded with a butterfly release that provided several wonderful photos as family members released their butterfly in honor of their loved one.

Trio PiTTsburghchaPTer meeTing

saTurDaY, noVember 15th10:00am at agh

The TRIO-Pittsburgh Chapter has its monthly support group meetings to discuss your transplant concerns and issues. Meetings will be the 3rd

Saturday of every month.

Monthly meetings alternate locations: UPMC Montefiore, LHAS Auditorium, 7th Floor next to main lobby or Allegheny General Hospital, Snyder Auditorium, 1st Floor,

South Tower

For additional information about the Transplant Recipients International Organization Pittsburgh Chapter please visit

www.trio-pittsburgh.org.

hosPiTal DeVeloPmenT Developing hospital satisfaction through routine after action reviews

An After Action Review (AAR) is a structured review or de-brief process for analyzing what happened, why it happened, and how it can be done better by the participants and those responsible for the project or event. They are used in business as a knowledge management tool and a way to build a culture of accountability.

This year, the Hospital Development Team has formalized a process for reviewing each organ donation case with both hospital and OPO personnel involved in the case. These AAR’s can fill a room with everyone that is involved! We have participation from Physicians, Nurses, Respiratory Therapists, Social Workers, Operating Room staff members, Organ Procurement Coordinators and Clergy; just to name a few. The AAR is facilitated by the Professional Services Liaison from CORE and there is a routine set of questions and process measures that are reviewed. CORE’s Organ Procurement Coordinators have agreed to be on-site for each AAR and they have been an invaluable resource in the success of the review process.

Leda Heidenreich represents UPMC Mercy Hospital as the hospital liaison to CORE. The following is Leda’s account of the AAR experience. “After action reviews are a valuable tool to gain insight on what processes are successful and help to identify opportunities for improvement for donor hospitals and CORE.” This has been a popular sentiment among our hospital partners. We have conducted nearly 100 of these process reviews and hospital satisfaction is on the rise. Action items for each case are cataloged and monitored for completion at the end of the review. These action items will continually focus and streamline processes on donation cases and improve outcomes for hospital staff, donor families and recipients into the future.

PleDge for life gosPel iDol

sunday, november 9, 2014 3 p.m.

WVsu capitol center Theater123 Summers Street • charleston, WV 25301

Presented by the National Donor Sabbath Celebration, CORE & the WV Multicultural Task Force.

Judges will choose 10 contestants to go to the final round. Top 10 contestants will perform at the event.

For more information or questions, contact Lisa Upsher at lupsher@core.org or 1.800.366.6777.

Team PiTTsburgh Time share funDraiser

Who doesn’t love a vacation??Take a chance this year with one of Team Pittsburgh

Transplant’s fundraisers!

Raffle tickets are being sold to win a one-week long vacation at a RCI timeshare property anywhere in the world! Read

on below for more details!

Tickets are $5 each and each ticket has two numbers, which

means two chances to win!

The winning number will be based on the evening drawing of the Pennsylvania Lottery-First Draw on New Year’s Eve,

December 31, 2014.

The winner may choose any property managed by RCI -- national or international,

based on availability.

Questions can be directed to fundraising@teampittsburgh.org

eYe bank eye bank Purchases new specular microscope

The CORE Eye Bank recently upgraded a piece of equipment used in the eye processing lab and purchased the Konan CellChek EB-10 specular microscope system. A specular microscope is used to evaluate the endothelial cells of the cornea. The endothelium is the back layer of the cornea. Its function is to pump fluid out of the cornea enabling the cornea to be clear. When the endothelium is dysfunctional, it can lead to corneal edema or swelling and reduced vision which can ultimately lead to corneal failure and the need for transplantation. These cells do not regenerate and gradually decrease in number over the course of time. Assessing this layer is not only required, but necessary when determining the success of a donor cornea for transplant use.

The Konan CellChek EB-10 specular microscope system represents the latest in endothelial cell analysis, algorithms, and computer technology. The microscope easily captures consistent, high quality images, which allows for more accurate analysis of the corneal endothelium. In addition, pachymetry (the measurement of corneal thickness) can be performed. This feature provides the eye bank specialist with an additional piece of information in determining the transplant suitability of donated corneal tissue received in the eye bank lab.

A report is generated and given to the corneal surgeon which provides not only an image of the endothelial cells, but also the pachymetry of the cornea, the cell count or cell density of the endothelium, and the degree of variation in the sizes and shapes of these cells. This information assists the surgeon when determining whether a donor cornea will be suitable for his or her particular patient.

Assessment of the corneal endothelial cell layer, morphology of endothelial cells, and corneal pachymetry are all indicators of corneal health. Accurate assessment is crucial and the Konan CellChek EB-10 specular microscope will enable the CORE Eye Bank to continue to provide corneal surgeons and their recipient patients the healthiest and safest corneal tissue possible.

mulTiculTural ouTreach Program facts concerning organ donation and the multicultural community

• There is an urgent need for organ donors in the multicultural community.

• Because conditions such as diabetes and hypertension are often more prevalent in the multicultural community, these individuals make up more than 50 percent of the people on

the national organ transplant list. At the same time, the multicultural community comprises only about a quarter of the registered organ donors today.

• There are 38,000 African Americans currently waiting for a life-saving organ transplant in the U.S.

• Certain diseases of the kidney, heart, lung, pancreas and liver that are best treated through transplantation are found more frequently in multicultural populations.

• African Americans and other multicultural patients are three times more likely to suffer from end-stage renal disease than Caucasians.

• African Americans represent the highest percentage of multicultural patients in need of a transplant, followed by Hispanics, Asians, Native Americans, Pacific Islanders and people of multi-racial descent.

Quick links

comments and/or Questions

submit Your story

become a Volunteer

Join our mailing list

regisTer To become a Donor

www.donatelifepa.org

www.donatelifewv.org

VisiT our links

WesTern Pa kiDneY suPPorT grouPs

The Western PA Kidney Support Group is a non-profit organization which has 12 locations all over Western PA. The group is comprised of kidney patients, transplant recipients, caregivers, friends, family and professionals. Anyone is welcome to attend a

meeting.

Please contactJack Silverstein at either

412-427-2969 orsilverjacki@yahoo.com

www.wpakidneysupport.org

Events in bolD need coverage. For more information please call 412-963-3550 or visit: www.core.org/community-outreach/calendar-of-events/

Volunteer for an event

uPcoming eVenTs

sun ThursWeDTuesmon fri saT

8craft fair -

connellsville, Pa

76Washington Task

force meeting

5monroeville lions club Presentation

4oVmc Pink Power

night

3erie Task force

meeting

2 Pittsburgh kidney

Walk

1

9West Virginia gospel idol

181716

14Town Hall Meeting

Clarksburg, WV

1511 Annual Palliative Care Symposium / uPmc altoona stroke support group

10 12ccac north campus ethics Presentation

/ Physician orientation

13

272625bedford Task force

meeting / altoona Task force

meeting

2423

22212019 Employee Orientation / educational seminar for Volunteers

noVember

28 29

communiTY ouTreach from referral to recovery and beyond: understanding the Donation Process

As you all know, CORE coordinates the recovery of organs, tissues and corneas for transplant. What does that mean exactly?

In response to many of you who’ve asked for additional education, CORE is offering an hour-long seminar to CORE volunteers and task force members that will improve your understanding of the donation process.

Specifically we will discuss the evaluation of a potential donor, how organs are placed, the surgical recovery process and the types of follow-up services that CORE provides including aftercare/grief counseling for our donor families and the procedure for contacting donor or recipient families.

Representatives from CORE’s Donor Referral Center, Recovery and Organ Procurement Departments and Donor Family Services, will use a real-life donor case to demonstrate the process, from start-to-finish, in a clear and interesting way. They will also be available to answer your specific questions.

The meeting is scheduled for Wednesday, November 19 at 6:30pm. Dinner will be provided. To attend, please RSVP to Katelynn Metz at kmetz@core.org.