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Volume 4, Number 1
Winter 2014


In this issue

Welcome
IIAM's Virtual Memorial

Neonatal Donor Program

Neonatal Lung Research
Gina Dunne Smith Reflects
Research Recovery Workshops
LifeChoice Donor Services
Anatomical/Gift of Body Program


Journal Archive



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Contact IIAM

IIAM Corporate Office
175 May St.,
Edison, NJ 08837
PH 732-661-2364
FX 732-661-2527
24-Hour Service:
800-486-IIAM
E-mail

Organ Division
Allyson Samuel,
Client Services Representative
PH 732-661-2364
FX 732-661-2527
E-mail

IIAM General Manager
Gina Dunne Smith
PH 610-486-0583
FX 610-486-0584
E-mail



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The Next Big Thing

We often use the expression "good things come in small packages." When it comes to donating neonatal organs, tissues and whole bodies for medical research, truer words have never been spoken. Due to the selfless acts of some special parents, their newborn children are giving the gift of life for generations to come. By launching the Neonatal Donor Program and planning to launch a Neonatal Donor Family Counsel, IIAM is pleased to be at the forefront of this exciting new initiative.

Speaking of a package that's worth its weight in gold, there's Gina Dunne Smith, General Manager of IIAM. As Gina reflects on her 20 years with IIAM, we see that she has been and continues to be a dynamic catalyst for many of the advancements in our field — some of which you'll read about in this issue.

For more information about IIAM, please visit our website.




IIAM Virtual Donor Memorial
100 Strong and Growing!

Virtual Donor Memorial

The Virtual Donor Memorial

Open the "Donors" menu on the home page of our website — and you'll discover an ever-expanding collage of photos honoring those who have donated organs and tissues for research and medical education through IIAM. We're proud and pleased to announce that our Virtual Donor Memorial has reached the 100-member milestone.

When you launch IIAM's Virtual Donor Memorial, you'll see that there's a lot more to the collage than meets the eye. Click on any photo, and you can pay tribute to each donor by reading about his or her life. Family members and friends of donors will also notice that by clicking on "Submit," they will receive instructions for posting a photo and story of their loved one. There is no time limit for participation.

"IIAM is grateful to all the donors and donor families of organs and tissues for research," said Angie Dianese, Donor Services Coordinator. "As a show of our profound appreciation for the gifts they've given to medical and scientific advancement, IIAM created the Virtual Memorial to commemorate the lives and legacies of these donors."

Note: All 100 donors were part of IIAM's Gift of Body Program. While we currently do not offer these services, we continue to honor families who gave the gift of life and knowledge over the years. Please read our Anatomical/Gift of Body Program story in this issue.

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IIAM Launches Neonatal Donor Program; Sets to Create Neonatal Donor Family Counsel

In September 2012, Bethany and Eric Conkel became the parents of Amalya, who was born without a brain and lived only 80 minutes. The Conkels spent the previous months contacting hospitals and facilities they hoped would fulfill their desire for donation — and were met with opposition.

The Conkels finally reached out to their local OPO, Life Connection of Ohio, and through them, were introduced to IIAM. With a proactive donor family and the support of OPO administration and hospital staff, we were successful in placing Amalya's liver and pancreas as well as coordinating whole body donation; all research supported childhood disorders.

In the year following this unforgettable experience with the Conkels, we've moved ahead with two initiatives to facilitate and support the donation of neonatal organs, tissues and whole bodies for groundbreaking research into childhood and general diseases.

IIAM's Neonatal Donor Program offers families a comprehensive, structured plan to take a heart-wrenching experience and offer some type of positive outcome. Our intention to create a Neonatal Donor Family Counsel, which will be comprised of donor families, will be a resource created to continually improve the program and to assist future donor families of babies with terminal diagnoses.

To date, IIAM has helped nearly 10 other families donate their babies' organs for medical research. IIAM's role is to establish and maintain a framework of communication among the donor family, OPO, clinical practices and the donor hospital:

  • Follow the case closely and participate in communication "huddles" with the OPO and donor hospital; timelines are determined based on the development of the case.
  • Contact researchers to evaluate and gauge interest as donor information becomes available.
  • Explore all medical rule-outs so we can prepare all parties with possible outcomes.
  • Plan logistics with the shipping courier and establish target flights.
  • For whole body donation, reach out to researchers to evaluate and target placement and determine if organ donation for transplant and/or research rules out whole body donation.
  • Provide the OPO and the donor family with neonatal FAQs.
  • Provide the OPO and recovery teams with recovery protocols.

If organ and/or whole body donation cannot take place for any reason, IIAM informs the family as soon as possible to allow them time to make other arrangements and be mentally and emotionally prepared. This is especially important for whole body donation, so families can make arrangements with a funeral home.

"It is so inspiring to interact with families going through such a devastating experience," said Gina Dunne Smith, General Manager of IIAM. "Those sacrifices made by donor families, in turn, inspire OPOs, hospitals and surgeons to contribute their resources to ensure that each donation is maximized."

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IIAM Partners with URMC in
Groundbreaking Neonatal Lung Research

Dr. Gloria Pryhuber

Neonatologist Gloria Pryhuber, MD

More than 550,000 babies are born prematurely each year in the U.S. — 35-45 percent of whom develop bronchopulmonary dysplasia (BPD). The annual cost of treating infants with BPD exceeds $2.5 billion, and studies of premature infants at adolescence suggest persistent, progressive chronic obstructive pulmonary disease (COPD).

Led by neonatologist Gloria Pryhuber, MD, a team of researchers at the University of Rochester School of Medicine is working to understand normal lung development so they can better grasp abnormal development and disease caused by premature delivery. "By understanding the process, we will be better able to remediate," said Dr. Pryhuber.

Working in partnership with IIAM, Dr. Pryhuber's team plans to identify, track and learn the function of lung stem cells and many other cell types that make up the complex organ. To improve the care of premature infants, and to encourage their lungs to continue along a normal pathway, it's important to understand what that normal pathway is.

Alveoli are tiny air sacs at the end of the smallest airways in the lung, where the exchange of oxygen and carbon dioxide takes place. By tracking the development of alveoli and other lung cells from 22-24 weeks of gestation to eight years, Dr. Pryhuber's team expects to learn when these cells become vulnerable to airway disorders and ultimately, how to combat these disorders. "It is very probable that what we learn will lead to new therapies for lung disease relevant not only to preterm infants, but also to adults with injured and scarred lungs," said Dr. Pryhuber."

She added, "Our collaboration with IIAM has been extremely rewarding, and its staff goes above and beyond to match the criteria we have established. Through a nationwide network of OPOs in a few short months, IIAM has given us unprecedented access to normal lungs from across the U.S. within the crucial 24-hour window. IIAM is strongly committed to neonatal donors, and it's obvious that they're concerned about the families who are giving these precious gifts."

"We're honored to be involved with this awesome project; Dr. Pryhuber is so respectful of the families as they make a very difficult decision," said Gina Dunne Smith, General Manager of IIAM. "We're working from the ground up to support this vital research — partnering with OPOs and their hospitals when parents are informed of fatal diagnoses during pregnancy in an effort to ensure these tiniest of organs and tissues can be donated."

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Gina Dunne Smith Reflects on 20 Years of Progress at IIAM

As IIAM has grown dramatically over the past two decades, there has been a radical shift in the way organ donation for medical research and education is perceived. One person is at the heart of both developments: Gina Dunne Smith, our General Manager.

Although Smith humbly attributes progress in the field to IIAM's well-oiled team of more than 40 specialists, she clearly has been the driving force behind non-transplantable organ, tissue and whole-body donation for medical research and education, coast to coast.

"What I find interesting as I look back over the years is the sheer acceptance of research donation today that was a nearly taboo topic when I left UNOS and began with IIAM," said Smith. "The resistance to talk about a research partnership was palpable. At that time, research donation was like a 'nice to do' and not a 'have to do.' We have come a really long way in the last 20 years!"

Prior to becoming IIAM's Manager of Professional Relations in 1993, Smith recognized the missed opportunities for non-transplantable organs when screening and placing donor organs at the UNOS Organ Center. Often prompting the OPO to confirm whether the organ could be used for research, she recognized a poorly tapped niche. Her journey with IIAM began soon thereafter.

"Despite the success with changing attitudes about donation for medical research, the work to educate and inspire OPOs to embrace donation for research is ongoing. It's important to constantly remind professionals about the impact of their efforts. It's really amazing what's going on in the world of research — often immediately impacting the world of transplant."

When Smith started with IIAM, over 16,000 people were on the waiting list for transplants. That list has grown to more than 100,000. "Maybe there will come a day when people won't die waiting; other options to prolong someone's life may exist," she said. "And when a cure for certain diseases is found, that will eliminate the need for many transplants altogether. That's the value of research… that's why our mission is to strengthen our relationships with OPOS and keep research a prominent contender in organ and tissue placement options."

IIAM now partners with nearly every OPO nationally and over 90 active researchers, but Smith's greatest source of pride is that donation for research and education is now part of the discussion," she said. "I feel like we're finally sitting at the 'adults' table' instead of the side table!"

Despite these achievements, Smith isn't the kind of person and IIAM isn't the kind of organization to rest on its laurels. "We're always looking to find the next big thing; the next great service," she said, pointing to recent strides in neonatal donation (which we explore further in this issue).

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IIAM’s Recovery Workshops Improve Procurement Process

IIAM’s biannual Research Recovery Workshops have become so beneficial to OPOs, we receive inquiries about the next workshop even before the date is posted on our website.

The reasons for the growth and success of these workshops are clear. “By sharing and standardizing organ procurement methods, this expert training enables OPO professionals to improve the entire organ procurement process,” said Mike Vara, IIAM’s Midwest and West Coast Regional Director, who administers the workshops. Another reason is that Vara and Jeremy Brown, IIAM’s East Coast Regional Director, conduct periodic in-services and other networking initiatives with OPOs across the country.

Research Recovery Workshops are designed to train OPO staff in best practices for recovering non-transplantable organs and tissues for research. Workshops also feature presentations by researchers about what their organizations are doing with IIAM-supplied organs and tissue. As a result, we’re helping to ensure that these precious gifts will be utilized as intended: to advance medical research.

IIAM held two workshops in 2013 — July 8-9 and December 9-10 — both at the Medical Education and Research Institute of Nevada (MERIN) in Henderson. “One of the highlights of both events was a presentation by Bethany and Eric Conkel, the proud parents of Amalya, who was born with anencephaly, a non-survivable neural tube defect, and lived only 80 minutes,” said Vara. “The Conkels spoke about how they overcame obstacles to have Amalya’s organs and whole body placed with researchers investigating childhood disorders.” Building on their efforts, IIAM is making headway in the area of neonatal donation. [Please see the Neonatal Donor Program story in this issue.]

In addition to Vara and Brown from IIAM, presenters at the July workshop included Jason Benjamin from LifeCenter Northwest, Danien Boone from LifeLink of Georgia, Barry Grace from the Nevada Donor Network, Eric Klindt from Organ Recovery Systems and Jayne Moraski from nPOD. Also participating in the workshop were researchers studying and working to combat pancreas, liver and kidney disorders.

At the December workshop, IIAM partnered with the NATCO/ISOP Perfusion Workshop and Wet Lab. Concurrent meetings were held and NATCO/ISOP were invited to join IIAM’s workshop symposium to hear our guest speakers talk about their latest research and the enormous value of obtaining human tissues for their studies. This workshop was approved for Category I CPT/CPTC CEU credits.

Vara also presented at the December event. Other presenters included Jason Benjamin from LifeCenter Northwest, the Conkels, Michael Garlough and Rebecca Milczarski from the Center for Donation & Transplant, Barry Grace from the Nevada Donor Network, Emily Montgomery from NPOD, and Deven Richardson from Life Technologies. Also contributing were Aaron Gilchrist from Bridge to Life, Eric Klindt from Organ Recovery Systems, Rodney Jones from Anabios and Daniel Martinelli from XVIVO Perfusion.

The December workshop was attended by representatives of the following OPOs: Carolina Donor Services, Center for Donation & Transplant, Donor Alliance, Intermountain Donor Services, LifeCenter Northwest, LifeLink of Georgia, LifeLink of Puerto Rico, Louisiana Organ Procurement Agency, Nevada Donor Network, Sierra Donor Services and Tennessee Donor Services.

With IIAM’s summer 2014 Research Recovery Workshop on the horizon, look for our “save the date” announcement… coming soon!

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LifeChoice Donor Services Takes Steps to Achieve Success

This issue's OPO spotlight is on LifeChoice Donor Services, which serves six counties in Connecticut and three counties in Western Massachusetts — with a combined population of 2.3 million people. In our field, that territory and population base isn't very large, so LifeChoice initiated a program that would benefit itself and other OPOs.

Spearheaded by Tania Houle, MBA, CPTC, Organ Procurement Coordinator, LifeChoice developed what's called a Small Network Group, which is comprised of several other OPOs across the country that have about the same number of organ donors per year. Representatives of the group meet bimonthly to share experiences and best practices.

"These meetings are a great way to network with like-sized organizations that face similar challenges," said Houle, who reports that "nPOD and IIAM presented from our office at LifeChoice in September to help us understand and engage in the wonderful research opportunities that are available."

She added, "What works for LifeChoice can be very different than what works for larger OPOs. With fewer staff members, many of whom having multiple responsibilities, we must make every opportunity count and be proactive to ensure success."

"Joining forces is a great concept," said Jeremy Brown, IIAM's East Coast Regional Director, who plans to develop the group's accomplishments into a poster for presentation at national conferences. "Previously, that kind of exposure wasn't possible for these small OPOs."

Another initiative putting LifeChoice on the map began with setting a corporate goal to boost the OPO's involvement in research projects. "We're working to maximize the research opportunities for each donor and increasing the overall number of organ and tissue placements for research," said Matt Pipitone, CST, who was named Organ and Tissue Recovery Specialist at LifeChoice.

"We set a goal of placing tissue for 20 special research projects in 2013, beyond our normal heart and lung placements," said Pipitone. "As of mid-September, we've placed skin, muscle, bone and breast tissue for 15 research projects and hope to exceed our goal for the year. LifeChoice is working weekly with Allyson Samuel and Jeremy Brown to find more research opportunities and fit research protocols. It's a true partnership."

"Both of these proactive initiatives undertaken by LifeChoice are a great source of pride for me," said Brown, who came to IIAM in 2012 after serving as an Organ Recovery Coordinator with one of our OPO partners, the Living Legacy Foundation in Baltimore, MD. "They are testimony to LifeChoice's dedication to maximizing every opportunity to support donor families through organ donation for transplantation and research."

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IIAM Discontinues Anatomical/Gift of Body Program

Effective September 15, 2013, the International Institute for the Advancement of Medicine (IIAM) no longer offers our Anatomical/Gift of Body Program.

For over 25 years, IIAM has served Gift of Body donor families with respect and compassion. We take great pride in our partnerships with medical education and research institutions that have discovered and perfected surgical techniques and other groundbreaking areas in medical technology as a result of the selfless decisions of donors and their families.

There are a variety of options available for Gift of Body donations. Please review your own state agencies as well as explore the many national organizations in the U.S. that specialize in this type of donation.

Rest assured, this transition will not affect IIAM's Organ Division. IIAM will continue to offer placement services for non-transplantable organs for medical research, education and therapy.

On behalf of the entire IIAM team, we extend our gratitude and appreciation for your support over the years with this service!

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©IIAM - International Institute for the Advancement of Medicine. | IIAM Corporate Office
175 May Street, Edison, NJ 08837 PH: 732-661-2364 | FX: 732-661-2527
24-Hour Service: 800-486-IIAM |
www.iiam.org |
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