NPGS 2023 Agenda
Friday 3 November
NOTE: The agenda will have two content tracks - one focussing on the latest developments in neuroblastoma research,
and the other on supportive care. We are pleased to offer the new Supportive Care track this year, which will run in parallel to the Research Track. Attendees can expect a safe and supportive forum with people who understand thier needs and experiences.
This agenda is subject to change.
13:30 GMT / London Time
Welcome
We are delighted that Dr. Daniel Morgenstern is hosting the NPGS live event again this year. He will be joined by the event organiser's charity leaders, Gail Jackson and Scott Kennedy, to warmly welcome you to the event. He'll also assist in navigating the event platform, offering guidance in accessing resources.
Dr. Morgenstern will also deliver a presentation focussing on highlights of neuroblastoma ‘news’ over the last year which will serve as a valuable backdrop for the various sessions scheduled throughout the day.
14:00 -15:50 GMT / London Time RESEARCH TRACK
Landscape Overview
The first session of the research track will provide an overview of neuroblastoma and the landscape of research that surrounds it. Designed to set the scene for neuroblastoma treatment today, it will include an introductory talk, an overview of clinical trials both in Europe and the US, and a talk on the role of immunotherapies in treatment.
An Introduction to Neuroblastoma with Dr. Susan L. Cohn
Dr. Cohn is a leading authority in the research community who has dedicated her life’s work to improving outcomes for children with neuroblastoma. To open the first session of our research track, Dr. Cohn will provide an introduction to neuroblastoma, including what the standard treatment pathway looks like today and how we got there.
Clinical Trials in Europe with Dr. Lucas Moreno
In this talk, SIOPEN President-elect Dr. Lucas Moreno will map out the clinical trial landscape in Europe for high-risk neuroblastoma, focusing particularly on trials for relapsed neuroblastoma including an update on the BEACON 2 trial. SIOPEN is a research association that brings together clinicians from across Europe to deliver clinical studies to find better treatments for neuroblastoma.
Clinical Trials in North America with Dr. Araz Marachelian
The New Approaches to Neuroblastoma Therapy (NANT) Consortium is a research network of institutions focused on developing better treatments for neuroblastoma. The Clinical Vice Chair, Dr. Araz Marachelian joins us at NPGS 2023 to provide an overview of the clinical trial landscape in North America.
Immunotherapies for Neuroblastoma with Prof. Juliet Gray
Immunotherapy is one of the most significant advances in the treatment of high-risk neuroblastoma, now being a part of standard therapy in most parts of Europe and North America. Dr. Gray is an expert in immunotherapy research for neuroblastoma, leading the Cancer Centre for Immunology at the University of Southampton. In this talk, she will provide an update on current research into immunotherapy and how it might shape the approach to treatment for neuroblastoma in the future.
Followed by a 45-minute discussion where you will have the opportunity to put your questions to the experts.
Moderated by Alan Pearson
14:00 -15:50 GMT / London Time SUPPORTIVE CARE TRACK
Psycho-Social Cancer Toolbox
In this session, themes around supportive care will be discussed with emphasis on mental and physical wellbeing of families and children affected by cancer. Clinical experts will share information and offer intervention strategies.
Spoonie Kids Fatigue Project with Joanna Hunt
This session explores how daily activities can take a lot of energy for children living with fatigue. In ‘Spoon Theory,’ a spoon represents an amount of energy. Different daily activities take different amounts of spoons. Joanna explains how this resource helps parents/caregivers to work with their child to understand how they can manage their fatigue, so they are better able to participate in activities, but without pushing themselves too far. The focus is about what a child can do, not what they can’t do.
PTSD & Anxiety with Dr. Natalie Jacobowski and Dr. Andrea Wojtowicz
In this session Dr. Jacobowski and Dr. Wojtowicz identify anxiety and PTSD symptoms in children of different developmental levels and suggest when anxiety in children may benefit from interventions. Parental anxiety and PTSD symptoms will be highlighted and the benefit of recognition and treatment to improve parent and family functioning.
Understanding and Addressing Pediatric Medical Trauma with Dr. Meghan Marsac
In this session, Dr. Marsac provides an overview of what is meant by medical trauma in children. She will discuss how caregivers can identify this in the child they are caring for and in themselves. Dr. Marsac will identify challenges children may face and discuss strategies to prevent and manage MTS (Medical Traumatic Stress).
Post Traumatic Growth with Dr. Hillary Van Horn-Gatlin
This session focuses on growth after trauma post treatment for caregivers and patients. Dr. Van Horn-Gatlin will explain the differences between PTSD and Post Traumatic Growth, discussing examples of Post Traumatic Growth and trauma positive outcomes.
Putting the Pieces Back Together with Dr. Mairead Brennan
This session explores the impact of a childhood cancer diagnosis on the family unit and how families adjust and adapt with a focus on the role of supportive programmes/interventions, self-care and peer support.
Followed by a 30-minute discussion where you will have the opportunity to put your questions to the experts.
Moderated by Mary Claire Rennick.
15:50 - 16:05 Break
16:05 -17:55 GMT / London Time RESEARCH TRACK
Advocacy in Research
The voice of the patient community is crucial to making progress in research that brings meaningful impact to children and families. Effective advocacy is becoming more and more present in neuroblastoma research, and in this session expert advocates and researchers will come together to demonstrate the power it holds.
What is Research Advocacy? with Donna Ludwinski and Emily Hall
Patients and parents play an incredibly important role in defining the direction of research into neuroblastoma, and many of the advancements in treatment seen today would not have been possible without their advocacy efforts. To begin the second session of this track, expert parent advocate Donna Ludwinski and advocacy specialist Emily Hall will give a brief overview of the concept of research advocacy.
The BORNEO Project with Dr. Wendy London
Advocacy can play a vital role in the development and progress of research. In this session, Dr. Wendy London will present the BORNEO project, which is an example of advocacy in action as BORNEO catalyzed by the challenge to the research community by advocacy groups and has been supported by advocacy work. At present, children with high-risk neuroblastoma are broadly treated with the same approach, but we know that even within risk categories there can be significant variation in disease from case to case. Biomarkers are fast becoming a powerful tool to better understand neuroblastoma on an individual basis, but none have yet been validated to further refine treatment pathways. BORNEO aims to harness global data on biomarkers to help develop a better risk stratification schema to ultimately improve better treatment plans.
Neuroblastoma in 2035: Perspectives on the Direction of Research with Prof Maja Beck-Popovic, joined by Donna Ludwinski, Emily Hall, and Dr. Wendy London
Whilst to many of us 2035 seems like the distant future, in research terms it is much more imminent. This session will be opened by SIOPEN President Maja Beck-Popovic who will take a high-level look at what the research community is hoping the neuroblastoma landscape will look like in 2035, based on insightful discussions that were had at this year’s Advances in Neuroblastoma Research conference. To follow the researcher perspective on what the neuroblastoma landscape will look like in 2035, we will invite the audience to share their thoughts and questions. Attendees will have the opportunity to discuss with all speakers from this session on this thought-provoking topic, highlighting the voice and needs of the patient community.
Followed by a 45-minute discussion where you will have the opportunity to put your questions to the experts.
Moderated by Nick Bird
16:05 -17:55 GMT / London Time SUPPORTIVE CARE TRACK
The Impact of Chemotherapy on Hearing
Exploring Hearing Loss from Cisplatin Treatment in Children with Dr. Penelope Brock and Kristen Knight, joined by parent Philly Simpkin and son, Ollie, and parent Jess Virdee
Neuroblastoma particularly affects young children who are in the process of developing language skills. Dr. Penelope Brock and Kristen Knight will examine the impact of cisplatin treatment on patient’s hearing and how children may be protected from chemo-induced hearing loss in the future. We’ll also hear from parents who will share their own experience of having a child affected by this.
This session will also include a 45-minute discussion where you will have the opportunity to put your questions to the experts.
Moderated by Dr. Penelope Brock
17:55 - 18:10 Break
18:10 -19:00 GMT / London Time RESEARCH TRACK
SPECIAL INTEREST TALK: CAR T-cells in the Clinic
This special interest talk will build on last year’s session at NPGS which looked at exciting developments in the lab related to CAR T-cell therapy for neuroblastoma. Since then, there have been several advancements in the clinical setting which give a promising outlook for this area of research.
An Introduction to CAR T-cells with Prof. John Anderson
CAR T-cell expert Prof. John Anderson will open this session with an overview of the basics of CAR T-cells and how research in this area has developed to date.
The GD2 CAR T-cell with Prof. Concetta Quintarelli
GD2 CAR T-cells are built specifically to target the GD2 molecule that is found on the surface of neuroblastoma cells and are the most common type of T cell CARs currently being tested for neuroblastoma treatment. Prof. Quintarelli is head of Cell and Gene Therapy for Pediatric Tumors at the Bambino Gesù Children’s Hospital in Rome. In this talk she will present the work of GD2 for neuroblastoma, including details of the recent Phase 1 /2 study published in the New England Journal of Medicine earlier this year.
This session will also include a 20-minute discussion where you will have the opportunity to put your questions to the experts.
Moderated by Antonia Palmer
18:10 -19:00 GMT / London Time SUPPORTIVE CARE TRACK
SPECIAL INTEREST TALK: Neuroblastoma Has Shaped But Not Defined Me
This session will amplify the voice of neuroblastoma survivors, giving dedicated time for Tom Becker and Tessa Watterson to share their hopeful stories about how childhood cancer has shaped but not defined them. After their presentations, families and audience members will have the opportunity to engage with Tom and Tessa and ask questions.
Moderated by Hayley Blackwell
18:10 -19:00 GMT / London Time SUPPORTIVE CARE TRACK
Hope in Grief
This session focusses on the unspeakable and breaking down taboos whilst identifying how grief impacts on all the family, including siblings.
Grieving and Loss with Georgia Kokkinou, Floga Parents Association of Children with Cancer
In this session, Georgia will speak openly and passionately about childhood loss and how breaking down taboos and barriers must be considered to help support the bereaved community.
How to Live with Grief with Natalie Jacobowski and Andrea Wojtowicz, Nationwide Children's Hospital, USA
In this session Dr. Jacobowski and Dr. Wojtowicz will highlight how grief has common and unique impacts on all members of the family. They will discuss common themes and considerations for parents and present the unique needs for siblings whilst taking into account general developmental considerations.
This session will also include a 20-minute discussion.
Moderated by Vicky Inglis
19:00 -19:30 GMT / London Time
EVENT WRAP-UP with MESSAGES OF HOPEDr. Daniel Morgenstern provides a summary of the day's presentations. Dr. Morgenstern will be joined by neuroblastoma parents, Matt and Colleen White, who will share their insights and messages of hope. The symposium will then close with a moving video tribute featuring neuroblastoma children around the world.
Please visit the video library for informative sessions
covering the basics of neuroblastoma, current treatments, and more.
How to prepare for the 2023 symposium
Neuroblastoma Basics: Dr. Ami Desai from the University of Chicago's Comer Children's Hospitalprovides a thorough overview of the biology of neuroblastoma, staging, treatment -
particularly aimed at newly diagnosed families.