Connecting worldwide at the IBTA Summit

30 June 2023 | News

Brain Tumour Support Services Manager, Lucy Wilkinson, looks back on IBTA Summit.

Looking back on the IBTA Sumit 2023

Brain Tumour Support Services Manager, Lucy Wilkinson, looks back on the sessions she attended and the depth and variety of topics covered in three days packed with presentations, workshops, masterclasses and discussions. Following the conclusion of the International Brain Tumour Alliance (IBTA) Summit 2023, Brain Tumour Support Services Manager, Lucy Wilkinson, looks back on the sessions she attended and the depth and variety of topics covered in three days packed with presentations, workshops, masterclasses and discussions.  Pictured: Lucy (right) and Tina Mitchell Skinner, CEO & Founder, represent Brain Tumour Support at the 2023 IBTA Summit.

Day 1

Monday morning’s clinical sessions initially focussed on innovative surgical techniques such as the use of fluorescent dyes to allow better visualisation of the tumour, and emerging technologies and future directions of radiotherapy.

This was followed by an update on the WHO classification of brain tumours and how molecular advances are informing diagnosis and treatment.

Next, we had an overview of current drug therapies and how newly acquired knowledge of tumour mutations is impacting systemic (drug) treatments, and novel and targeted therapies for primary malignant brain tumours.

The closing sessions were devoted to metastatic (secondary) brain tumours, both from a clinical perspective and also a patient advocacy perception, and unmet needs and next steps in the field of brain metastases.

Monday afternoon started with some masterclasses. I attended one on reaching out to underserved and disadvantaged populations in the brain tumour community and it was incredibly humbling to learn of the inequalities in accessing even the most basic healthcare in some countries.

The group then shared ideas about raising awareness despite incredibly limited resources.

A range of sessions followed, covering topics such as brain tumour-related epilepsy and factors informing the choice of drug treatments, and the challenges of developing international standards for brain tumour classification, with varying access to required resources worldwide.

The geographical reach of this conference was demonstrated by Monday’s final presentations: Chris Tse, one of the founders and the Chair of Brain Tumour Support New Zealand, spoke about a guide they have produced on returning to school following a brain tumour diagnosis.

Then an incredibly moving presentation relayed the challenges of treating brain tumours in Pakistan, and how collaboration between medical and patient experts is driving the mission of the Pakistan Society of Neuro-Oncology to provide non-medical support mechanisms for those impacted by a brain tumour diagnosis.

Following this, the first day closed with an oversight of the challenges of living with a brain tumour diagnosis in Mongolia, underpinned by a touching personal story around the losses of loved ones.

Day 2

Tuesday morning’s plenary session continued this truly worldwide focus. It began with an inspiring talk by Noa Faaij from The Netherlands. Noa’a research career in reducing stress in brain tumour patients started when he was 16 after he experienced his own father’s stress following a brain tumour diagnosis. Noa’s interventions, including exercise and mindfulness, were found to bring about a 33% reduction in stress in his study population.

Next, Anna Uzlova from Ukraine spoke very movingly about the impact of the war on cancer treatment and the immense challenges of continuing brain tumour treatment with the absolute minimum of resources.

This was followed by a presentation by Hugh Adams, Head of Stakeholder Relations at Brain Tumour Research, on the challenges and importance of raising awareness of brain tumours via community engagement, highlighting the importance of engaging those not directly involved with brain tumours.

Bec Mallett from Australia then shared her experiences of organising weekend retreats for brain tumour patients and families as well as some of the activities on offer at such events.
Chas Haynes, Executive Director of the Society for Neuro-Oncology, followed to speak about the importance of neuro-oncology medical societies and their impact in delivering education.
The session ended with a talk on brain tumour support in China and meeting patients’ needs by providing better physiological, psychological and family/social support emphasising the necessity of listening to individual patient need.

Tuesday afternoon’s sessions began with a valuable insight into the challenges of returning to work with a brain tumour, employment rights and how individuals can access support.
This was followed by two sessions on childhood brain tumours. The first speaker was Amy Wood, who spoke about the challenges of living with a hypothalamic-pituitary tumour, drawing on her experience of caring for her son, Alex.

The second session focused on the work of Childhood Cancer International and the value of patient and public involvement and engagement.

Next, a talk by Jolijn Boer covered the provision of support and resources to help those diagnosed with brain tumours in Germany. Jolijn gave a moving account of her father’s struggle with his brain tumour and their lack of awareness of the support available to them at this time.

In the final session of the afternoon Mary Lovely gave a presentation on the Milton Marks Neuro-oncology Camp. Mary described the annual camp as a “magical experience”, offering a plethora of activities including exercise, art therapy and support groups, helping with issues such as isolation, uncertainty and changes to family roles.

Tuesday was rounded off by Kathy Oliver, IBTA chair and co-director, talking about the importance of patient advocacy, a very relevant conclusion to an inspiring and thought-provoking day.

Day 3

Wednesday morning’s sessions began with a presentation on the Ocean and Sky Children’s Hospice in Japan. Hisato Tagawa was inspired to build the hospice after the sad loss of his daughter, Haruka, to a brain tumour, aged six. Hisato detailed the inception of the hospice and the realisation of his dreams after he had visited children’s hospices in Europe. Today, the Ocean and Sky Hospice offer a well-equipped, supportive environment, enabling families to live “in the moment”, despite a life-limiting diagnosis.

The morning continued with a detailed account of the complexities of and value in setting up a countrywide brain tumour registry, with learnings from the United States. Then followed a talk on medical ethics and the importance of acting in the best interest of the patient at all times, and how this should underpin every treatment decision.

The next presentation was by Kimberly Wallgreen from the USA. She spoke about her quest to improve outcomes for people with ependymoma, a rare type of brain tumour. Kimberly’s work is inspired by her own father, who sadly died in 2022 after he had lived with his brain tumour for 20 years.

The final session was a panel presentation on barriers to brain tumour research and how researchers worldwide can work collaboratively to advance cutting-edge investigations in this field and move things forward.

This was followed by closing remarks from Kathy Oliver, who was then presented with a book of handwritten and heartfelt thanks and reflections from all of the conference attendees.

The IBTA Summit was certainly an inspiring, collaborative and insightful three days. In addition to the sessions, the informal discussions and sharing of ideas and connection with people of diverse background and experience lends an added perspective on our own work. A great encouragement to our ongoing aim to deliver the most appropriate and effective support, and to reach as many people as possible, so that no one feels alone facing a brain tumour diagnosis.

Lucy Wilkinson, June 2023