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Volume 3, Number 1
Winter 2013


In this issue

Welcome
Baby Amalya Gives Life

IIAM Works Smarter

A Hero Among Us!
Meet Bridget Haraschak
Arizona Donor Memorial Ceremony
Kidney Disease Research


Journal Archive

Past issues of the
printed IIAM Journal
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An Issue to Warm Even the Coldest Day

We're very pleased to announce that one of our placement coordinators, Jamie Schneider, received the inaugural Hero Award from the Network for Pancreatic Organ Donors with Diabetes (nPOD), one of our valued research partners. His story has a surprise ending that makes it even more compelling.

You'll meet several other heroes throughout this issue — in the heart-warming story of a neonatal multiple donor, Amalya, and his parents, Bethany and Eric; in our staff spotlight on Bridget Haraschak, our donor coordinator, who played a key role in Amalya's donation; and in the profile of researcher Kevin Bennett, who is making progress in the early detection of kidney disease.

This issue also announces IIAM's entry into electronic donor tracking, a hot topic in our field that promises greater speed and keener insight.

For more information about IIAM, please visit our website.


Baby Amalya, a Multi-Organ and Gift of Body Donor, Continues to Give Life

Every so often a story grabs our hearts and never lets go. Born on September 10, 2012, a baby named Amalya and his parents, Bethany and Eric, made an indelible impression on everyone at IIAM who was involved in this amazing story of unconditional love.

Although Amalya died only an hour and twenty minutes after he was born, he is truly living up to the meaning of his name: "work of the Lord." His life was short, but his pancreas, liver and whole body are making invaluable contributions to medical research that could ultimately help others live longer.

Amalya's first ultrasound in March revealed a very rare neural tube defect known as Acrania, which prevents the formation of the skull. This condition becomes Anencephaly, in which the brain doesn't develop fully or is destroyed by the acidic amniotic fluid. Typically babies with this condition are stillborn or die shortly after birth.

A Brave Decision

Soon after learning Amalya's fate and guided by their deep religious convictions, Bethany and Eric decided to fully embrace their baby and their role as parents. They gave him as many experiences as possible in the womb and made memories that would last forever — keeping a scrapbook and sharing a monthly online diary of events and feelings.

Over the spring and summer the family read books and played music, camped and hiked, cooked and baked, and watched classic cartoons and the Olympics. They planted a tree in their front garden and took trips to parks, markets, garage sales, picnics, fireworks, a concert, a carnival, a bonfire, the zoo, putt-putt golf and a baseball game. Amalya also went on outings with his grandparents and had special bonding time with other family members.

Bethany and Eric discovered that Amalya had favorite foods and toys. They have a photo taken from an ultrasound in August, when it looked like he blew his parents a kiss. Another highlight was Amalya's 24-week "life day party," a celebration in lieu of future birthday parties — complete with streamers, big balloons, a huge cake with special decorations, and family and friends.

The Miracle of Donation

Early in their journey, Bethany and Eric decided to donate Amalya's organs for transplantation, but they found limited opportunities and stringent restrictions. After several months of research, they were informed donation would not be possible.

With a C-section scheduled for Monday, September 10, what Bethany called a "miracle" happened. Three days before his birth, the couple found out that they would be able to donate Amalya's liver, pancreas and aorta to rare medical research studies, as well as make a whole body donation for training doctors in a specialized pediatric procedure.

Gina Dunne Smith, General Manager of IIAM, added, "We couldn't predict how long the newborn baby would survive, but we knew that the longer he lived, the more likely organ donation would have been compromised. Yet our top priority was to honor the couple's wish to spend as much time with their son as possible — including a birthday party celebrated by 27 people."

Bridget Haraschak, CTBS, Donor Coordinator for IIAM, recalls picking up the phone that Friday. "Bethany and Eric's story was so amazing, it's a day I'll never forget," she said. "We moved mountains, coordinating researchers and, through the outstanding work of Ellen Blair, Life Connection of Ohio, clinical support staff to fulfill this family's wish to donate. IIAM has a network of professionals that make me proud, and researchers remained on call to answer all of our questions to help this family."

"After Amalya passed in their arms, everything proceeded flawlessly," said Smith, "with full transparency for the family. By the time Bethany recovered from her delivery, his organs had already been recovered." She credits Ellen for making a plan that balanced all considerations and choreographing the sequence of events. And she stands in awe of Bridget's commitment to the donor family.

A Rare Gift

Bridget noted that normally families don't find out specifically where their donations go, but due to the incredible story of Amalya and his family, these researchers were happy to share that information.

Amalya's pancreas was placed with the Network for Pancreatic Organ Donors with Diabetes (nPOD). Because the neonatal and infant pancreas holds information that is lost in the adult pancreas, this gift is crucial to helping researchers understand how disorders like Type 1 Diabetes begin and perhaps how to thwart its progress. IIAM also placed Amalya's liver with Cognate Labs, which will produce a population of stem cells that can be stored and recovered into mature hepatic cells, which can be used to develop cell therapy, advance our understanding of hepatitis and identify safer medicines.

Through IIAM's Gift of Body Program, Amalya's whole body will be used to train many doctors, nurses and other medical team members to use intraosseous vascular devices for emergency lifesaving vascular access — as well as for less painful and more effective bone marrow aspiration and biopsies for cancer patients. This procedure is focused on pediatric patients.

"Much of this neonatal research is so rare and there is so much to be known," said Smith. "Studying Amalya's organs is like opening a time capsule. This tiny soul has made giant contributions to medicine, and his family was incredibly selfless. We're grateful for the opportunity to align our comprehensive resources. The power of giving is so tangible; this case, these people, justify what we do."

Bridget added, "Holding Bethany's hand during her most difficult time was both humbling and inspiring. The strength, love and hope that she and Eric displayed show us that every day is a gift, and what we do for others is the most gratifying part of life."


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DonorTrac Plus Helps IIAM Work Faster and Smarter

DonorTrac

Gone are the days of painstaking data entry that was often repetitive and difficult to coordinate. Enter DonorTrac Plus, a database system that enables IIAM to track active and archived donors, and integrates an electronic system for screening and allocating donors.

Developed by Statline, DonorTrac Plus will provide IIAM with a seamless interface to DonorNet, which is supported by the United Network for Organ Sharing (UNOS).

"When IIAM goes live with DonorTrac Plus in March, we will become a true data center," said Gina Dunne Smith, General Manager of IIAM. "In real time, we will be able to access any and all prior and/or current IIAM donor demographic and screening criteria."

For IIAM and its partners, DonorTrac Plus delivers unprecedented efficiency:

  • Eliminates time-consuming donor screening that often was duplicative
  • Data populates the record in real time
  • Makes handwritten paper issues, as well as scanning and faxing, obsolete
  • Always available, not vulnerable to local power outages as during Hurricane Sandy

DonorTrac Plus also will enable IIAM to report to clients, researchers and MTF with a click of a button:

  • Easier to match a donor organ with an active researcher
  • Takes only the data we need from DonorNet, which we can customize to automatically match screening for specific criteria
  • Automatically generates monthly reports to OPOs and researchers; as well as letters to OPOs and donor families, updating progress made by researchers studying specific diseases

"With DonorTrac Plus, IIAM will be more productive with organ offers as well as Gift of Body donors — receiving them in a more timely fashion with more complete, objective data — and will make information available to researchers and partners in real time," said Deidre Ellis, Statline’s General Manager.

Smith and Ellis agree on a farther-reaching benefit of DonorTrac Plus — beyond collecting and distributing data efficiently. IIAM will now be able to analyze information as never before to discover trends and truly understand the implications of that information. And that’s a big "plus"!

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A Hero Among Us!

Jamie

Jamie Schneider Wins Inaugural nPod Hero Award

Jamie Schneider, MSBA, Placement Coordinator for IIAM is so proud of being the first person to earn the Hero Award from the Network for Pancreatic Organ Donors with Diabetes (nPOD), he uses that designation in his email signature line.

And we're equally proud of him. In fact, Jamie's qualities and performance are, to a large extent, the reason why nPOD created the Hero Award — which recognizes an individual who goes "above and beyond" to help nPOD identify and obtain rare Type 1 Diabetes organ donors.

The award was presented by Mark Atkinson, Ph.D., Executive Director of nPOD, a collaborative Type 1 Diabetes research project funded by the Juvenile Diabetes Research Foundation (JDRF) and located at the University of Florida College of Medicine in Gainesville.

Suzanne Ball, RN MHS, Director of nPOD, said, "We feel that Jamie's work has been crucial in helping to make nPOD the most accessible source of tissue to facilitate investigator discoveries. We're pleased to present this award to him and thank IIAM for being a valuable partner."

Likewise, Schneider admires nPOD for its emphasis on collaborating with other researchers to unlock the mysteries of Type 1 Diabetes. "Efforts by organizations like nPOD to share breakthroughs are creating a paradigm shift in medicine," he said. "This new way of thinking and working promises to translate scientific findings into outcome-based medicine as quickly as possible."

Although Schneider is honored by this exclusive recognition by nPOD, he feels that by screening a pancreas for criteria designated by a researcher, he's just doing his job. In this instance, he dug deeper to discover that a particular medication that a donor was taking was the one that nPOD was looking for.

Schneider feels that nPOD's efforts also go "above and beyond." He explained, "Even if a pancreas procurement isn't surgically ideal, nPOD has the resources to use it effectively." In addition, nPOD's location near a small airport in Florida makes receiving a pancreas within 24 hours a challenge. They have come up with some creative solutions — charting connecting flights and even making the three-hour roundtrip drive to Jacksonville International Airport to beat the clock.

Gina Dunne Smith, General Manager of IIAM, has high praise for Schneider's work. She said, "Jamie has shown his dedication to donor families through his unwavering efforts to honor their wishes for donation to medical research when transplant is not possible. He is often heralded as the Placement Coordinator with the highest placements in a given month. When we were told Jamie would receive nPOD's first Hero Award, it brought a smile to my face and a sense of satisfaction that his efforts were being recognized in such a deserving manner."

Smith feels that nPOD's selection of an IIAM employee to be the first recipient of this distinguished award is poignant. She explained, "IIAM and nPOD began collaborating in 2009 when we became their national partner. Through our network with virtually every OPO in the U.S., IIAM directs placements of both Type I and Type 2 Diabetic pancreata, as well as certain autoantibody (+) donor pancreata to nPOD so they can begin the tedious process of isolating islets and distributing these cells among their network of prominent JDRF researchers to better understand Type I Diabetes and its onset."

To date, IIAM has provided nearly 100 pancreata toward finding a cure for Type I Diabetes, including the one from baby Amalya, whose inspiring story is this issue's feature.

Schneider wants our readers to know that he is a Type 2 Diabetic, and that he participates in the American Diabetes Association's Tour de Cure. He has biked 40 to 60 miles at events that raise funds to support the ADA's mission to "prevent and cure diabetes and to improve the lives of all people affected by diabetes." In 2011, more than 55,000 cyclists in 80 Tour de Cure events raised more than $18 million.

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Meet Bridget Haraschak

Bridget

Bridget Haraschak, CTBS, Donor Coordinator

It didn't take long for us to choose the subject of this issue's staff spotlight. For starters, Bridget Haraschak was a key figure in facilitating the multiple donations by the parents of baby Amalya, whose story heads the Winter 2013 lineup.

"Bridget is a tremendous asset to IIAM — a reliable donor coordinator and a wonderful human being," said Gina Dunne Smith, General Manager of IIAM. "She has the experience, foresight and compassion to meet all the needs of our donor families. Bridget was the right person to work with Amalya's parents, and she gave more than we could have asked."

Before coming to IIAM in 2008, Bridget spent 13 years in tissue banking — in the areas of donor screening, medical suitability, recovery, processing, distribution, QA/regulatory and transplant. "That background gave me a global understanding of the gift of donation and made me more keenly aware of the value of research," she said.

As a donor coordinator, Bridget supports and assists patients and their families through their decision-making process. She also conducts in-service sessions with individuals, healthcare providers, hospice personnel and family caretakers on the importance of organ, tissue and whole-body donations for research. She said, "I don't look at my work as challenging but rather fulfilling," Bridget said. "I am blessed to be presented with adversity as well as joy."

Rick Daniels, Supervisor at IIAM, painted a glowing picture of Bridget. "You'll discover immediately that Bridget is very passionate about helping other people and leaves a meaningful, lasting impression on their lives. She has a magical way of bringing light into people's lives in perhaps their darkest hour of losing a loved one. It's an honor to have Bridget on the IIAM team. She plays many roles and excels in all of them."

Asked how she spends her time away from the job, Bridget laughed and said, "I'm a professional volunteer. Whether it's working with the local food bank and boy scouts, tutoring students in school, or participating in other community outreach… I'm there!" Bridget is also there for her husband and twin boys, whose home is in York, Pa.

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Arizona Donor Memorial Ceremony

IIAM will host its annual Donor Memorial Ceremony on Sunday, March 3, 2013, from 2 to 4 p.m. at the Phoenix Airport Marriott in Phoenix, Arizona.

This touching nondenominational ceremony — which features a candle-lighting memorial and musical reflection — honors recent donors, recognizes their families and loved ones for the remarkable gifts of life and hope, and helps provide closure and comfort. If you're interested in attending the ceremony or being involved in some other way, please contact Angie Dianese, Donor Services Coordinator, at Angie_Dianese@mtf.org or 570-496-3441.

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Filtering Out Solutions for Early Diagnosis of Kidney Disease

Kevin

Nephrologists today have a wide array of treatment options for patients with kidney disease. However, prevention and early detection are another story. By the time many of these patients are diagnosed, they are well on the way to life-altering and -threatening end-stage renal disease (ESRD).

Kevin Bennett, Ph.D., Assistant Professor at the School of Biological and Health Systems Engineering at Arizona State University, is doing something about the situation. He and his colleagues are making progress developing an MRI contrast agent that can reveal signs of kidney disease long before they show up in blood and urine tests.

"Since this marker binds with specific molecules in the kidney glomeruli (filters), it can reveal whether these molecules are either absent or have leaked into the kidney tubules," said Dr. Bennett. "Because the structure of a kidney is tied very closely to its function, this capability can predict kidney disease long before its onset — enabling physicians to minimize its effects or even prevent it."

Dr. Bennett is collaborating with a pediatric nephrologist to start the early stages of the FDA approval process and steer the MRI contrast agent toward a clinical trial. In the not-too-distant future, he also expects the results of this study to lead to possible non-invasive methods to assess the risk of a kidney transplant failure — and possibly to predict a person's susceptibility to cardiovascular disease.

His team is working now to create a non-profit consortium dedicated to promoting early advanced diagnostics, which offer significant public health benefits, as well as a division that markets technology from its research.

Dr. Bennett recalls meeting Jeremy Brown, IIAM's East Coast Regional Director, and several other members of our staff at a recent MTF meeting. "I'm very impressed by IIAM's efficiency and passion and by how much people like Jeremy put into their work.

He also wants everyone who reads this story to know something else: "We take donations very seriously and we truly appreciate each one. We want to assure donor families that we won't take an organ unless it will be used to its fullest research capability."

Dr. Bennett has accepted a position as Associate Professor at the University of Hawaii at Manoa this spring, where he will be the founding director of a new MRI research facility. The move will allow him to continue his work with IIAM and his research in early markers of kidney disease, and potentially to broaden its impact.

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