Juvenile Arthritis Research’s Post

"Be the change you want to see in the world." A well known quote and one that we live by at Juvenile Arthritis Research. If it's needed, we do it. If it needs to change, we do our best to make it happen. If there is a gap that exists, we fill it. Juvenile Arthritis Research was started in 2018 to fill the gaps that remained after decades of very little change in terms of awareness of Juvenile Idiopathic Arthritis (JIA) and the huge lack of support for families. We wanted to ensure that researchers stayed focused on what matters most to families - to one day find a cure for JIA. As well as our own research projects, we work with universities, hospitals and other organisations from around the globe to bring us closer to a world where no child has to suffer from arthritis. Because that is a change we all want to see happen. And we believe that everyone can do something to make a difference. Whether it is raising awareness of JIA in your own community and within your networks, raising funds to support our vital work, or being an ambassador for Juvenile Arthritis Research by telling others about us and what we do to support families and bring about change, it is within each person's ability to make a difference. Let's be that change together to change the world for children with JIA. https://lnkd.in/eMbdwU8s #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology 

"Lettie's Little Box of Hope arrived today. Thank you so so much. It is wonderful." A big thank you to Lettie's family for sending us fabulous photos of Lettie receiving one of our Little Box of Hope packs. It means a lot to our volunteers to know just how helpful these packs are and how appreciated and needed they are. When Juvenile Arthritis Research first began 6 years ago, there was very little support available to families facing a diagnosis of Juvenile Idiopathic Arthritis (JIA). We set about to change that. With the help of a young volunteer who came up with the concept of A Little Box of Hope and the support of our volunteers and healthcare professionals, we created a pack that contains all the information you need at the start of your JIA journey and reassurance to know that you aren't alone. When someone requests a Little Box of Hope pack from us, it unlocks all our support services so they'll have access to our peer-to-peer network, our ParentZoom meetings, face-to-face events and any 1:1 support they or their school need. It's all made possible by our fantastic volunteers and those who donate and fundraise to support our work. Our Little Box of Hope packs are available to those with a diagnosis of JIA in the UK and can be requested at www.jarproject.org/hope We love seeing these wonderful photos of your children receiving their packs - please do keep sending them in. If you've sent your photo in but haven't seen it yet on social media, please keep an eye out over the coming weeks. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

At Juvenile Arthritis Research we know how important it is to work together collaboratively. We can achieve so much more by working together rather than in isolation. And we also know that there are some amazing organisations and networks out there to help support us as a charity, and to enable us to be more effective. There are many different groups, networks and organisations that charities can affiliate themselves with. Of course, some are better than others and some are more effective than others. We are careful which networks we join, and only link with those that add real value to the people we exist for - children with juvenile idiopathic arthritis (JIA) and their families. Any affiliation has to help us be more effective in our research, awareness and support work as well as policy-making and lobbying activities that take place behind the scenes. Every penny donated to us makes a real difference, so we won't join networks just for the sake of it. Whilst many are free to join, membership of certain networks costs money that we believe could be better spent supporting children and their families. Although we may be a small charity, we believe in ensuring that we are an incredibly effective charity to enable us to make real progress in our core areas of research, awareness and support. These are just some of our affiliations and collaborations that enable us to be more effective in all that we do to better support children and young people with JIA. Read more about these at https://lnkd.in/gj_KseWZ #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

Every day we receive messages of thanks from those we have supported. Those who had nowhere else to turn. Families who were feeling overwhelmed and worried about their child's diagnosis of Juvenile Idiopathic Arthritis (JIA). With the information and resources that we provided them with and with 1:1 support from our volunteers and access to a peer-to-peer support network, they were given the information and strength they needed to carry on. Many of our resources are recognised as being world-leading resources being translated and used all around the globe. Our awareness initiatives are leading the way in making a real difference to improving earlier diagnosis and helping those with JIA feel less alone. Our own research has been published in scientific journals, presented at international conferences and we have worked with countless other research teams on collaborative projects. All of this has been achieved by our amazing volunteer team in the 6 years since Juvenile Arthritis Research began. But... Our small team of volunteers are so busy doing all these vital areas of work that despite the difference we are making, finding the funding to do all that we do remains our biggest challenge. We currently have an urgent need for funding for a new resource that will save lives. Doctors, medical professionals, volunteers, parents and patients have given their time to create this essential new resource. We now urgently need the funds to get it printed and distributed to reach where it is most needed to make a difference. If you can help introduce us to any funding opportunities such as corporate sponsors or wish to make a donation specifically to make this resource a reality, please get in touch by emailing kipo@jarproject.org #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything 

It was a delight to receive this photo from Seth's mum showing Seth receiving his Little Box of Hope support pack from Juvenile Arthritis Research. Seth's mum told us "I just want to say thank you so much for Seth's pack. So much info and he loves Kipo." There is a reason why the boxes are called a Little Box of Hope and it is because at that worrying and overwhelming time when you have a child diagnosed with Juvenile Idiopathic Arthritis (JIA), it can be hard to imagine what the future will look like. We know that with earlier diagnosis, and getting started promptly on treatment, we can achieve better outcomes for children with JIA. Once the right medication and treatment is underway, many children can lead full and active lives as they grow up with JIA. We want to remind families of that hope as well as letting them know that we are here for them. Because when families connect with us by requesting a Little Box of Hope pack, it is just the beginning. Our volunteers can then support them through their JIA journey as much as they need with 1:1 support, a peer support network, help with any challenges at school and so much more. So if your hospital doesn't yet know about us and what we offer families completely free of charge, please do let them know and ask them to get in touch. We have lots of signposting materials available to hospitals too. www.jarproject.org/hope #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

Our new Systemic JIA / Still's disease resource is now on it's way to rheumatology hospitals. As a small charity, experiencing a rapidly growing need for our services and the increased costs of postage and printing, we've had to prioritise sending these out initially to those families who have a child with this sub-type of JIA and now to rheumatology hospital contacts. We hope that over time we'll have the funds and resources to be able to share them with every hospital and GP practice who may see a child with Still's disease and for them to know the signs and symptoms of Macrophage Activation Syndrome (MAS) which is a rare but serious complication that can happen in those with Still's disease. If you know of any funders wishing to partner with us in supporting this work - please put them in touch! #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #sJIA #SystemicJIA #Stillsdisease

We love Myles' Christmas wish saying "I wish juvenile arthritis was extinct." We too wish JIA was extinct and as we work hard towards a cure, we really appreciate everyone who has been supporting us. We've now reached the £1,000 milestone in our Christmas appeal. Thank you to everyone who has donated. Please keep sharing the appeal with friends and relatives who may be considering a charity to support this Christmas. By choosing to support Juvenile Arthritis Research, you are helping families feel less alone, you are providing support to those who most need it, you are enabling earlier diagnosis through better awareness, you are creating a better future for children with arthritis, and you are choosing to move closer to a world where no child suffers from arthritis, or in Myles' words, where juvenile arthritis will be extinct. Thank you! Find out more about our Christmas appeal and share your own Christmas wish with us at https://lnkd.in/eXecCJaM #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology 

We loved seeing this fantastic compilation of photos from Iris raising awareness that young people can get arthritis too with one of our "I'm not too young for arthritis posters". Awareness of Juvenile Idiopathic Arthritis (JIA) is low. Our recent research showed that only 19% of the UK population knew that children under the age of 5 could get arthritis and only 40% knew that children under the age of 16 could get arthritis. We are working hard to improve earlier diagnosis through improved awareness with our #ThinkJIA campaign amongst frontline health professionals, schools and communities. For too long the word "arthritis" has been associated with the elderly and this misconception that it only affects older people has led to delays in diagnosis, misdiagnosis, treatment not starting soon enough, stigma and lack of understanding for those affected by JIA. It is thanks to young people like Iris and the amazing children and young people who helped to raise awareness with our posters for WORD day, that will amplify our impact by raising awareness in your own social circles and communities too. You can find out more about raising awareness on our website at https://lnkd.in/eFUraKip and on our WORD day hub at www.jarproject.org/word Sharing any of our social posts and videos can also help raise awareness. Thank you to everyone who already does this. It is making a difference to the lives of those with JIA! #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

ONE MONTH TO GO... until #WORDday2024 WORD day is World yOung Rheumatic Diseases day which happens on 18th March each year. It is the biggest date in the calendar for raising awareness of Juvenile Idiopathic Arthritis (JIA) and other rheumatic conditions in children and young people. As WORD day ambassadors and part of the international WORD day organising committee, we are incredibly excited about WORD day this year. You can find out more about WORD day on our WORD day hub on our website at www.jarproject.org/word You'll find downloadable posters to print and share on your own social channels to raise awareness that children and young people can get arthritis too. Raising awareness is the single biggest thing that any of us can do to make a difference to those living with JIA. That's why it is one of our core aims at Juvenile Arthritis Research and why we run our #ThinkJIA awareness campaign all year round taking some of the key messages from WORD day about the importance of awareness and early diagnosis to key audiences like schools, communities and GPs. We'll be sharing ideas of how to get involved over the coming weeks as well as more details of the upcoming WORD day webinars. Find out more about WORD day at www.jarproject.org/word and help change the world for children and young people with JIA. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology

"The Little Box of Hope you sent has really lifted her spirits so a huge thank you for making our little munchkin smile." Receiving a diagnosis of Juvenile Idiopathic Arthritis (JIA) can bring with it a rollercoaster of emotions for the whole family. Children can find it a scary and worrying time not knowing what is wrong and feeling isolated and alone. Parents / carers can fear what the future may hold for their child. Our Little Box of Hope support packs that are sent out by our volunteers help those diagnosed with JIA know that someone cares and that they are not alone. Packed with information, resources and a few extra items to make life with JIA a little easier, they have been described as a lifeline by those receiving them. Here's Ellie with her Little Box of Hope pack. Each of our packs for under 10s contain a handwritten note from Abbie. Abbie has JIA herself and was the young person who came up with the idea of A Little Box of Hope for other children to know they are not alone. Many thanks to Ellie's family for sending in this photo. It is thanks to our fundraisers and donors that we are able to send these packs to children when they most need it. If you'd like to sponsor a Little Box of Hope pack to enable us to support children and families when they are first diagnosed with JIA, you can find out more at https://lnkd.in/eUfb_CwT #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology