Dear All

It is with sadness that I share the news that our first IPTA president John Najarian has died. We would like to celebrate his life and the difference he made to pediatric transplantation and send condolences to his family and colleagues (see his obituary – R. Fine). A really amazing man!

I trust you are all getting used to the new ‘normal’ and have all started your transplant programs again in those centres that stopped transplantation during the COVID pandemic. In South Africa, we are just emerging from a very tight 6-month lockdown this week, but watch the second wave in the Northern Hemisphere with a sense of despair – we really need a vaccine!

On the positive front, we have appointed our new committee members and it is great to have new ideas as the committee teams are already hard at work.

Our next highlights are the appointment of new candidates for Councilors and Officers positions beginning May 2021 and urge those interested in serving IPTA and the pediatric transplant community to apply before 30 November 2020.

We have just attended the TTS 2020 Virtual Congress which had an exciting separate pediatric track organized by Catherin Parker and Lars Pape with help from Katherine Twombley and Jonathan Johnson. This first of its kind meeting for TTS was entirely virtual and across 3 time zones - Montreal, Frankfurt and Seoul - enabling people from all over the world to participate (see our update from Gabriel Gondolesi).

We watched this congress with interest as we continue to plan our own Congress IPTA 2021, Prague Sept 11-14 and are still hoping to have a live meeting at least in some format. People enjoyed the TTS2020 congress but all agreed at a virtual networking event, that nothing quite beats drinking a Czech beer or Becherovka liquor in person with colleagues!

We also congratulate Marcelo Cantarovich on being elected TTS President as he takes over from Mehmet Haberal, and look forward to working with him.

Our Allied Health Professionals committee has changed their name to Allied Health and Nursing Professionals (AHNP) Committee and they have provided a charming story about Camp Chihopi. Please look out for their professional practice survey.

Our ‘Meet the Greats’ include Richard Trompeter and Steven Webber as pioneers in our field.

Our Pediatric Transplantation Journal (PETR) has had a great year with the impact factor once again increasing to 1.425 – congratulations to the editors and all those who participate with manuscripts as well as reviewing.

Look out for our Literary Review from the IPTA Education Committee and our Mentoring initiative.

We have started an international initiative around Advocacy for Children in Organ Allocation led by Evelyn Hsu, Stephen Marks and myself and would really appreciate a few minutes of your time answering a survey as we gather information about Pediatric Transplantation around the world.

Stay safe and thanks for all you do for the pediatric transplant community.

Best wishes

Mignon McCulloch
IPTA President

Do you wish to serve IPTA and the global pediatric transplant community? Or do you know someone who you believe is a pioneer in the field? The IPTA Nominations Committee is seeking qualified candidates to be considered for open Councilor and Officer positions beginning in May 2021.

All applications will be reviewed by the IPTA Nominations Committee, who will present a final slate of candidate Councilors and Officers to the IPTA membership for the 2021 election.

The IPTA Nominations Committee welcomes nominations and applications from anyone who has been an IPTA member in good standing for at least 1 year.  Service to IPTA on committees or special activities relevant to the society is an asset.

The deadline for online submission of applications is November 30, 2020.

Application Procedure

Applications for open Councilor and Officer positions must be submitted using the online Call for Nominations Application. Completed applications must be submitted by November 30, 2020.

You will need the following before proceeding to the application:

• Briefly describe your role as it relates to pediatric transplantation (Limit 50 words)
• Please list any involvement or activities you have participated in with IPTA
• Briefly describe your reason for applying for a leadership position at this time (Limit 100 words)
• Nominee Statement (300 words): Identify and describe a key issue addressing a challenge in pediatric transplantation and why you believe that it is an important issue for IPTA to address. Please note that this will be used in materials sent to the IPTA membership.

To be uploaded on the site (pdf or Word documents):

• Two letters of support from two members in good standing of IPTA.
• Curriculum Vitae

Applicants will be notified in December 2020 as to the status of their acceptance to the slate of Councilors and Officers for the 2021 election.

Click here to find out more and to nominate

Virtual S’mores: Camp Chihopi in the Time of COVID

For many children, summer includes days at the pool, playing with friends, special vacations and maybe attending summer camp - a rite of passage for many. Being away from home, meeting new friends, and participating in activities leads to the development of new skills and greater independence.  Some may think these experiences are unrealistic for children who are transplant recipients, but Camp Chihopi, created in 1995, has made that dream a reality. This annual event, through the Department of Transplant Surgery at UPMC Children’s Hospital of Pittsburgh, provides a non-medical environment that encourages campers to engage with peers of similar medical experiences within the setting of a summer camp. Chihopi provides an invaluable experience for young transplant recipients to learn skills to increase independence, build relationships with peers, improve self-esteem, and enhance understanding of their health, while participating in typical summer camp activities.

The summer of 2020 was going to be like the previous 25 summers – fun events, new and sustained friendships, making memories and being active in a beautiful camp setting. Then life changed dramatically for all with the COVID pandemic. Now what?

Faced with cancellations in every type of social encounter, it became evident that the safest plan was to cancel Chihopi 2020. Although we were becoming accustomed to cancellations, social distancing, masks, and virtual programming for school, meetings, and gathering with friends, it was still heartbreaking to cancel Chihopi. We had been hopeful that late summer might bring some normalcy, but adhering to current safety guidelines would be challenging with a camp environment that includes cabins of up to 12 campers and staff, a shared dining room, and close contact during activities. Following meetings with the Heart Camp leaders at Children’s Hospital, who were also planning a virtual camp, and internet research on other summer camps that were changing to a virtual platform, the Chihopi team began developing “V-CHOPI,” a virtual way to celebrate our friendships, connections, fun activities, and the spirit of Chihopi. About half of the usual group, 42 campers and 20 staff, participated in the week-long event.

Campers were invited to attend a 5-day event with specific programming that would take a virtual twist on favorite activities. Sitting around a campfire together and making S’mores wasn’t possible, but everyone could make their own campfires (cardboard paper towel rolls and colored tissue paper) and enjoy pre-made S’mores.  Water sports weren’t available, but “Floatie Friday“ provided a challenge to present their unique version of a water activity – which could be swimming in the bathtub with flippers and a snorkel! The campers’ creativity, imagination and enthusiasm were amazing! With current events in mind, the theme of camp was “Mask-erade.” Each morning, campers received an email with instructions that included their thoughts about the question for the day, pictures to post related to the theme of the day, and preparation for activities. The week before camp, campers received the Chihopi Camp Cube by snail mail with supplies, a camp T-shirt, and other camp necessities.  Two one-hour sessions, as recommended by national on-line camps, were scheduled and organized through Zoom. There were all-camp activities but campers were also divided into cabin groups for the afternoon session. Chihopi staff, including older transplant recipients and transplant team members, were also recruited and participated as session leaders.

V-Chihopi far exceeded our hopes for the event. We knew that campers would enjoy seeing each other, even virtually, and renewing friendships, but the strong connections, and the degree of openness and communication that occurred was unexpected. Each session had adult leadership from experienced camp staff and also one to two senior leaders to help facilitate discussions as needed. During activity sessions, campers would speak spontaneously about their medical experiences, peers, family and activities. One young camper remarked how his house “exploded” with alarms twice daily when it was time to take his medicine. This led to a long discussion about remembering to take medications and what strategies are used in their homes. In addition to taking meds, another theme was the bond they shared with other campers because of their transplant surgery. The campers discussed medical experiences from difficult times in the hospital to favorite nurses and tips in taking medicine that tasted “nasty.”  Listening to campers, and the staff who are transplant recipients, discuss shared experiences and the support they receive from each other validated this virtual experience. In some ways, the virtual format seemed to encourage more personal discussion. Campers also enjoyed getting to know each other better through the backdrop of the campers’ homes. They could meet siblings, were introduced to pets (including a pot belly pig that could do tricks on demand!), saw stuffed animal collections and participated in a back-yard birthday party. Chihopi had an international perspective with our camp friends from the School of Nursing at Keio University in Tokyo who facilitated an origami session. The students and their instructor were active participants during camp week, despite the 13 hour time difference!  “Ask the Transplant Team” was a fast hour of Q&A between the campers and team with insightful questions about transplant surgery to favorite ways to relax. Interestingly, the virtual format provided the ideal platform for this session, which had never been as successful at camp. With Zoom, the session became a more private interview and encouraged more discussion, positive exchange between campers and the team, and contributed to our understanding of each other because of our relationship through transplant.

This has been unforgettable summer in many ways. Although being together at Chihopi is what all the campers and staff hope for, it has become an opportunity to develop Chihopi as a virtual touchpoint throughout the year. Plans are being made for a holiday event, a planning session in the spring to engage the campers and staff for Chihopi 2021, and a virtual cabin orientation prior to camp. Rather than being only a place holder for “real” camp, V-Chopi strengthened the camp bond and is yet another experience the campers will have in common. Chihopi campers know that there are others with the same experiences and with whom they always have support and understanding. We learned that both virtual and real connections can be impactful.

Beverly Kosmach-Park
Director, Camp Chihopi

The IPTA Publications committee would like to reach out to IPTA members to support our activity in encouraging mentorship for more junior colleagues.

Publishing is often difficult for less experienced researchers, especially for those who work in structures where performing research and writing of publications are not considered a priority.

The International Pediatric Transplant Association (IPTA) promotes the involvement of junior career members into the scientific community. For this reason, IPTA would like to facilitate the access to research projects and publication by initializing a mentorship program.
IPTA would like advanced clinician and researchers to consider becoming a mentor.  We would like to propose different levels of mentorship, which one could engage in with a more junior colleague:

1. The basic level of mentorship would be providing help with publication to non-native English speaker. The mentor will serve mainly as “proof reader”, i.e. will help with language corrections. Such help should not imply a substantial manuscript revision, therefore the mentor should not expect to share authorship of the paper and should only be acknowledged for her/his contribution
2. The second option is that the mentor substantially contributes to the writing of the manuscript. As this is more demanding a shared authorship may be discussed with the mentee and her/his institution depending on the extent of the contribution.
3. A third level of mentorship would involve the mentor already during project design and research development. At this higher level of mentorship, the mentor may also give advice to professional development of her/his mentee. In case this contribution should lead to publication, we would strongly advice that authorship should be shared
4. In specific cases, mentorship could be an ongoing process, which could lead to a “visiting professorship” of the respective mentor at the mentee’s institution. This could include an active engagement of the mentor by providing educational webinars on e.g. “Manuscript writing”, “Designing and developing a research project”.

We are aware that the level of involvement may change over time and should be adjusted by mutual understanding between mentor and mentee to reach their expectations.

We would appreciate if senior IPTA members would be willing to provide mentorship at one of the levels indicated. Once you indicated your willingness to support the program, we would list your name, area of expertise and level of engagement you are willing to provide on IPTA’s website. If there are any further questions, please contact Anette Melk (melk.anette@mh-hannover.de).

The International Pediatric Transplant Association believes that it is important to represent the international community of members and the patients and the families they serve. By broadening our reach into advocacy, we can advance the cause of children and youth who stand to benefit from transplantation worldwide.

The International Advocacy group has the intention to survey the existing landscape of allocation for pediatric transplantation, define an ethical mandate for pediatric priority in deceased donor allocation to pediatric recipients, and determine an optimal path forward to execute this mandate on an international scale. 

Please respond to this survey link in order to provide information to help us define allocation practices for children worldwide! Thank you for your care of children and your involvement in the IPTA.

Click here for survey

Dr. Richard Trompeter is Emeritus Consultant Paediatric Nephrologist at Great Ormond Street Hospital for Children (GOSH), London, and Honorary Consultant Nephrologist and Clinical Academic at University College London Centre for Nephrology, The Royal Free Hospital. He is a graduate of Guy’s Hospital School of Medicine, London.

He trained in paediatric nephrology at GOSH and the Institute of Child Health where as a research fellow he developed an interest in nephrotic syndrome, which remains a major clinical and academic part of his career. He completed his training at Guy’s where between 1979 -1983 and was privileged to be part of the team responsible for pioneering kidney transplantation in some of the youngest children in the UK at that time.

He was appointed as Consultant Paediatric Nephrologist at The Royal Free Hospital in 1984 and set up the renal transplant programme for children in the north of London and subsequently established the dialysis and kidney transplant programme for children at GOSH in 1986, and became a full time Consultant at GOSH in 1989. The transplant service developed a national and international reputation, and he was a major participant in initial randomised clinical trials to demonstrate efficacy of various immunosuppressive regimens.

He was appointed the first Chairman of the GOSH Clinical Ethics Committee in 2000.

He retired from GOSH in 2009 and set up the first Transition Service for young adults with CKD at the UCL Centre for Nephrology at The Royal Free Hospital campus. Current research is focused on the molecular genetics of nephrotic syndrome and the benefit of transition services.

He has been a supporter of IPTA from 2005, serving on many committees, Council and EC. President from 2013 – 2015 and founding Chairman of the Ethics Committee 2017 -2019.

He is a past President of the Paediatric and Child Health Section of the Royal Society of Medicine,  and previously a member of the  Ethics Committees of the British Transplant Society, European Renal Association and TTS.

Married to Babs, they have four children, Sara a Consultant Haematologist, Alex a Consultant Orthopaedic Surgeon, Nick a Barrister, Becky the marketing and production manager for the National Society for the Prevention of Cruelty to Children (NSPCC), and eight grandchildren.

Dr. Steven Webber is the Chair of the Department of Pediatrics at Vanderbilt University and the James C. Overall Professor of Pediatrics. He also serves as Pediatrician-in-Chief of the Monroe Carell Jr. Children’s Hospital. He is a native of the UK and graduated from the University of Bristol Medical School. He trained in internal medicine, pediatrics and pediatric cardiology in the UK, Canada and the US. He joined the faculty of the Children’s Hospital / University of Pittsburgh in 1994 where he served as Chief of the Division of Pediatric Cardiology, Co-Director of the Heart Institute, and Medical Director of the Heart and Heart-Lung Transplantation Program. 

His research interests include post-transplant lymphoproliferative disorders, understanding the genetic contributions to graft and patient outcomes and the role of antibodies in determining graft outcomes after pediatric thoracic transplantation. Dr. Webber has been the recipient of numerous federal and foundation grants. He has published widely and is the author of over 200 peer-reviewed publications. He has served as the Editor-in-Chief of the journal Pediatric Transplantation and is Co-Editor of three textbooks: Pediatric Solid Organ Transplantation, Post-Transplant Lymphoproliferative Disorders and Textbook of Organ Transplantation.

Dr. Webber has served as President of both the International Pediatric Transplant Association (IPTA) and the Pediatric Heart Transplant Study. He is a past Chair of the Thoracic Committee of the United Network for Organ Sharing. He has served on the Board of Directors of the American Society of Transplantation and of the International Society for Heart and Lung Transplantation. He recently received the 2019 IPTA Pioneer Award.

He enjoys reading history and learning Norwegian.  

Dear Transplant Colleagues,

The IPTA Allied Health and Nursing Professionals (AHNP) committee have compiled a professional practice survey. 

The goals of this survey are:

1. To describe the prevalence and diversity of the clinical, research and teaching practice of Allied Health (AH) and Nursing team members internationally.
2. To understand the multidisciplinary composition of transplant care teams and develop an international framework regarding professional practice.
   
3. To identify possible barriers and challenges for AH and Nursing professionals within their role, with the aim of improving and supporting AH and Nursing practice development specifically within the field of pediatric transplant.
4. To support a publication related to international AH and Nursing practice in pediatric solid organ transplantation   

If you are an Allied Health or Nursing professional (both members and non-members of IPTA): please consider completing the survey (see link below) and forwarding it to your non-IPTA colleagues.

Physicians and other members: Please share this email with your Allied Health and Nursing colleagues at your centre, and encourage them to complete the survey (You do not have to be a member of IPTA to complete this survey)

You may open the survey in your web browser by clicking the button below.

IPTA Allied Health and Nursing Survey

The survey should only take about 5-10  minutes to complete. You participation is voluntary, and all responses will be de-identified to ensure anonymity. 

We are extremely grateful for your time 

IPTA AHNP Committee