A letter from our founder
Embarking on a Journey of Hope
As we stand on the threshold of a new year, I am compelled to reflect on the remarkable journey we have undertaken together. Nine years ago, my life changed forever when my daughter – then aged just 2 years old – was diagnosed with Juvenile Idiopathic Arthritis (JIA). Little did I know it then but what the future held in store was not only the new regimen of hospital appointments, tests, medications and treatments to get used to but that my own life would change beyond recognition in the coming years.
You see, I had already seen the devastation that JIA can cause. When left undiagnosed and untreated, joints can become permanently damaged leading to lifelong disability. I’d witnessed my wife struggling all her life as she too had JIA since the age of 10. I didn’t want that for my child. I didn’t want history to repeat itself.
As a scientist by background, I decided to go back to my roots in bio-medical research to ask the questions and seek the answers to some of the ‘big questions’ that remain. All of the questions that my wife had all those years ago about JIA still remained unanswered. In the intervening 30 years between my wife’s diagnosis and my daughter’s diagnosis, it seemed no-one had been looking for those answers. And shockingly awareness of JIA remained as low as it had before with many people not realising that arthritis can affect children. This low awareness is a primary reason for the delays in diagnosis. Something had to be done!
Daring to do things differently
The easy option would have been to sit back and carry on hoping that one day some answers would be found. That one day we’d understand more about the causes, effects and impacts of JIA, and wish that one day someone somewhere would stumble across a cure for JIA. But history had shown me that waiting patiently was not the answer - Those 30 years between my wife’s diagnosis of JIA and my daughter’s diagnosis had shown that.
So at the start of 2018, I set up Juvenile Arthritis Research (or JAR project as we called it initially) to start to find some of those answers to the questions that we as parents had. Answers that will help to one day find a cure for Juvenile Idiopathic Arthritis.
Since then we’ve grown to a team of over 20 amazing volunteers, developed a wealth of support resources and information for families affected by JIA, been part of international conferences sharing our research findings and leading the way in patient information and awareness campaigning, with our resources being translated and used across the globe and our #ThinkJIA awareness materials available for use in primary care, schools and communities.
We regularly receive praise and feedback about everything we do from our social posts with people telling us “it’s like you really understand what we are going through”, to our support packs – “it contains all the information we needed at the time we most needed it” – and that’s because we are parent-run and our volunteers understand what it is like living with JIA because they too are on a similar journey.
Our vision, aims, and values are not mere corporate statements; they are deeply personal. We yearn for a future free from juvenile arthritis, spurred by our commitment to making a difference in the present. This really matters to us because it affects our own children, and we can’t sit around waiting for someone else to do it at some distant point in the future. We are making a difference now.
It’s not enough
It would be easy to pat ourselves on the back right now and see just how far we have come in the past 6 years since we began. We’ve seen the landscape in the world of JIA begin to change. We’ve seen the difference that parents and patients can make in driving forward research priorities. We’ve helped to fill some of the gaps in providing information and support for those with JIA. But it is not enough.
We’ve shown that being small can have its advantages in terms of being agile, fast to respond and not hindered by bureaucracy. It often surprises people to realise just how small we are given the huge strides we have made in the world of JIA.
But we also daily experience the challenges of being a small charity with limited capacity and limited budget. We don’t have the luxury of big marketing teams or big fundraising teams to secure funding for us. We operate on a shoestring budget, with a small team of volunteers who all face their own challenges of living with arthritis or having a family member with arthritis. We juggle our day-jobs and other responsibilities alongside everything we do as volunteers for Juvenile Arthritis Research and I often find myself wondering how much more we could do if we did have the resources and budget to enable us to go even further, faster.
That’s why we are incredibly grateful for every single person who has ever made a donation or fundraised for us. We don’t receive ANY government or big grant funding so every penny you donate or raise makes a huge difference in what we can do. I’m overwhelmed with gratitude that we have such loyal supporters that recognise the difference we have together been making over the past 6 years and who are passionate about helping us do more.
If you take a look at the timeline below of just some of the things that we’ve achieved, it would be more accurate to say that this is a timeline of what YOU have achieved because none of this would have been possible without our fundraisers, supporters and donors. We are eternally grateful to you. You are changing the world and changing the lives of children with JIA. Thank you.
We’re in this together
Our volunteers often describe a feeling of family and being part of the JAR family. I too feel this way. What may have started out as a one-person mission soon became a vision that so many of you are supporting too. Many of the families we have regular contact with are also part of the JAR family. We love to hear from you and how your children are doing. We know that having JIA is rarely a straightforward journey and we are here to celebrate the little wins along the way – the blood test that went well, the medication working effectively, navigating injections successfully – as well as the times that we share virtual tears together hoping that better times will come. Our peer-to-peer support networks have developed so that you don’t have to experience these feelings alone. If you’ve not yet received a support pack from us, please do request one here (UK only) as it unlocks access to many of our other initiatives such as becoming a member of our private Facebook group called A Little Network of Hope, joining our research panel, and hearing about our parent-zoom events.
We’re on this journey together and as we embark on a new year together, I’m excited and encouraged by all the possibilities that lie ahead of us…possibilities that have been made possible by you – our incredible community.
With heartfelt gratitude,
Founder, Juvenile Arthritis Research