EACD 2024

This year’s European Academy of Childhood-onset Disability (EACD) conference was the 36th meeting for the association and brought together healthcare professionals, researchers and families from across the globe.

The central theme of the 2024 conference was ‘composing a new symphony’, inviting participants to explore innovative research and build new connections by embracing positive thinking, taking responsibility, and reshaping plans to meet the needs of an ever-changing world.

I was delighted to be given the opportunity to go to the conference this year alongside my colleagues from Cerebral Palsy Cymru. As well as being a Clinical Specialist Physiotherapist, I am a member of EACD’s Families and Users’ Forum (FUF), representing siblings as my twin brother, Simon, has cerebral palsy.

At the conference, several of my colleagues delivered poster presentations to share the impact of the work we have been doing at Cerebral Palsy Cymru through various projects including ‘Escapades!’, ‘Jungle Explorers’, and our specialist early intervention service ‘Better Start, Better Future’. The team also had a chance to showcase the collaborative work we have been doing with the Cerebral Palsy Register for Wales and Cerebral Palsy Youth Voice Wales. I’d like to take this opportunity to say a huge well done to Helen, Marissa, Rachel, Sally, and in particular Gosia and Jenny who also took part in symposiums on early intervention and clinical decision-making.

The opportunity to present our work, and network with EACD members throughout the conference, enabled us to develop links and learn from families and other professionals from all over the world which is hugely beneficial in helping us to optimise the services that we offer to our families at Cerebral Palsy Cymru.

Aside from supporting my colleagues, I attended many presentations and talked to researchers around using powered mobility for infants who are likely to need additional support to move around by themselves, learning that “it’s not just about learning to drive but driving to learn.”

This helped me to focus my thoughts and ideas prior to the launch of our own early mobility group ‘Let’s Move Together’ which starts later this month.

I was also very excited to meet other members of the Families and Users’ Forum (in person rather than on a screen!) at the conference. It was wonderful to get to know them better and continue our discussions around how we can further increase the involvement of families in research and the development of guidelines, for example for early intervention. I felt really proud to be part of such an inspirational group of people, both as part of the team at Cerebral Palsy Cymru and across the EACD network. 

My personal highlight of the conference was the huge effort the organisers made to put families and those with lived experience of disability at the heart of all that we are trying to achieve. 

This was beautifully encapsulated by the striking performance of a young girl moving gracefully around the stage in her powered wheelchair before being raised up by dancing children in the Opening Concert.  

What also resonated strongly with me during the conference were the views and suggestions from parents and people with lived experience of disability, on how to promote shared engagement with trust, patience and respect for their unique situation.
I also appreciated the clear passion of everyone I spoke to, to provide timely support and help to empower parents and people living with disability now and for the future, and the reminder that we should consider their choices and preferences in helping to make interventions targeted and relevant throughout the lifespan.  

I feel that the messages that I took home from the conference are closely aligned with our values here at Cerebral Palsy Cymru. As a charity that was set up by a group of founding parents, we recognise the importance of building relationships with families, sharing relevant knowledge and making joint decisions, and ensuring our interventions are meaningful to the child or young adult.

As one of the speakers at the conference eloquently summarised; “we all want to live a good life today, tomorrow and in the future!”