Changing the world for children with JIA: The Childhood Arthritis & Beyond Conference and Cassie + Friends family day 2024

Once in a while, you experience something that changes you. It feels so big and significant that it takes a while to even begin to process your thoughts. For us, visiting Canada as part of the Cassie + Friends #ConnectingJA day followed by the UCAN-CANDU Childhood Arthritis & Beyond Conference was one of those times. 

It re-ignited the fire in our hearts and reminded us of exactly why Juvenile Arthritis Research began - to see a cure for children with Juvenile Idiopathic Arthritis (JIA) so that we can one day live in a world where no child has to suffer from arthritis. 

We've always believed in more for our children with JIA. More than just treatment, more than respite, more than relief - We want to see a cure for JIA so that every child and young person with the condition can achieve permanent unmedicated remission. Perhaps one day we'll go beyond that even and understand the clues to actually prevent JIA too. 

We've never been afraid to dream these big dreams, and dare to hope for a cure for our children and to take steps towards that in everything we do. 

Going to Canada to attend this special two-in-one conference was one of those important steps. Last month we were invited to attend two conferences in Canada which had been carefully created to seamlessly flow from one into the other and bringing together the power of patients, clinicians and researchers in a truly transformative way.

Our time in Canada started with the Cassie + Friends family day in Toronto. We all know how important it is to connect with others to share knowledge and experiences and to benefit from peer to peer support. In the UK we do this through our online Parent Zoom sessions, 1:1 support for families, our online parent/carer network and our face-to-face local events. Cassie + Friends have gone a step further in creating a special #ConnectingJA family day uniting families from all across Canada at the event.

Bringing together a range of topics and activities, the children were able to enjoy the day with age-appropriate sessions to learn more about their condition and connect with others who also have a rheumatic condition - from an animal encounters session, to meeting an inspirational celebrity, to teddy bear clinic - the whole day was jam-packed with so many fun activities for the children. Parents and caregivers had a range of talks about relevant topics to choose from ranging from gut health and nutrition to transition, mental health and more.

As the #ConnectingJA day came to an end, the Childhood Arthritis and Beyond conference began.  To say that we felt excited by the research that we heard about is an understatement. The research team are making breakthroughs that are going to change the way we think about and treat Juvenile Idiopathic Arthritis. Just knowing that we've found others in the world who not only believe, as we do, that a cure for JIA is possible, but are getting closer and closer to a world where no child has to suffer from arthritis, fills us with an intense and incredible hope. We were delighted to be there to represent the UK in standing with this team and showing our support. 

Much of what was presented was 'hot off the press' as yet unpublished results. We can't wait until more can be shared about what is happening in this field to bring the children and families that we support hope for what the future holds. 

We look forward to sharing more about this exciting research in the future. The research team have been invited to speak at the ENCA online conference on Saturday 14th September. Sign-up now to hear more.       

The incredible UCAN-CANDU research team: Dr Deborah Marshall, Dr Susa Benseler, Dr Bas Vastert, Dr Rae Yeung and Dr Joost Swart.

A cure for JIA can be within our reach as we collaborate on a global scale, believing this goal is possible and taking steps to get there.

Music to our ears: A research team that is bold enough and brave enough to believe that a cure for JIA is possible just as we do.

Getting closer to a cure: yes! yes! yes!

Every session began with the patient perspective- leading the way in ensuring authentic patient involvement. Deva and her dad opened Day 3 of the conference with a moving talk.

Our two co-founders Rebecca and Richard Beesley were invited to attend the conference as Juvenile Arthritis Research share the same vision and goal of finding a cure for JIA

The UCAN-CANDU research team leading the way towards a cure for JIA

An honour and privilege to be amongst such inspirational people changing the world for those with JIA: The UCAN-CANDU research team, Cassie + Friends and Juvenile Arthritis Research

JAR meeting the Cassie + Friends team. We've worked together on various projects in the past so it was fantastic to meet up face to face. 

Jennifer and David from Cassie + Friends with Rashmi, founder of the Systemic JIA foundation and Rebecca and Richard, co-founders of Juvenile Arthritis Research.

Young people with JIA from across two continents connecting and making friendships that will last a lifetime.

Our mascot Kipo with a bear from Cassie + Friends representing our collaborative partnership spanning our two organisations and our two countries.

Meeting Natasha - an inspirational young person who started the Take a Pain Check podcast.

Ice Hockey: The Scoring goals for JA event.

Dr Deborah Marshall's work looks at the bigger picture of the wider impacts of JIA on families, education, employment and society. 

Can you spot the actual 'Cassie' from Cassie + Friends? We were very excited to meet the person who was the inspiration for Cassie + Friends starting.