Juvenile Arthritis Research

FATIGUE…It’s more than just feeling tired. It’s beyond exhaustion. It’s a feeling of not being able to get out of bed even after a full night’s sleep. It’s not being able to move however much you want to get up and get on with your day. It’s my body feeling so very heavy. It’s my limbs feeling like they are made from lead. It’s brain fog preventing me from thinking clearly. It’s trying to take a step and feeling like you are wading through treacle. It’s feeling like everything…anything…is too much effort. It’s a very real side-effect of having Juvenile Idiopathic Arthritis. It’s not my fault. Written for us by a JIA warrior. 

Christmas card season is here. Every year we are asked whether we sell charity Christmas cards. The answer is that we don't. The reason is simple, we've never found a cost-effective way of doing it that benefits the charity so it would cost more to create and supply Christmas cards than would be raised for Juvenile Arthritis Research. Instead, we would encourage anyone who wishes to support us in this way to consider making a donation towards our Christmas appeal in place of sending Christmas cards. By January, a physical Christmas card will usually end up in someone's recycling bin. A donation made to Juvenile Arthritis Research will enable us to be there for those that most need us all year round and it's thanks to you and your kind donation that allows that to happen. Feel free to screen shot this image and email it to friends and family to let them know that you are supporting Juvenile Arthritis Research this year. If you'd like to make a donation to support children with arthritis in place of sending cards this year, you can give a gift of any amount 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

"So great to have the opportunity to connect with others in a positive way over a condition that can be so difficult to live with." "Amazing event - the adults could chat about experiences out of ear shot of the children." "I really value being able to connect with other parents whose children have JIA." "I enjoyed meeting and talking to other parents." This is just some of the wonderful feedback we received after our recent event enabling parents/carers of those with JIA to connect. We'd like to take this opportunity to say a very big thank you to Involve Kent from whom we received a grant to enable parents and carers feel less alone. Involve's mission is to help people live happier, healthier lives by empowering communities to live well and one of the ways they do this is by helping to tackle isolation and loneliness. We know that a diagnosis of JIA can feel lonely and isolating and parents have told us that they don't often get the opportunity to meet with others who understand. That's why events like these are so important. We'd also like to say thank you to our local volunteers who arrange such wonderful events that help make life a little easier and less isolating for families affected by JIA. We're often asked when we will be arranging events in other areas. We can only do this with the help of volunteers. So if you feel able to arrange an event in your area, please get in touch about joining our volunteer team by emailing michelle@jarproject.org

We are delighted to have been involved in the British Society for Rheumatology's latest guideline scope: Pain Management in People with Inflammatory Arthritis, which has just been published in Rheumatology Advances in practice journal. You can read the BSR's news piece about the guideline scope at bit.ly/PainScope and the full article is available at bit.ly/PainManagementScope (please note the shortlinks are case sensitive). The full guideline is expected to be published in 2026 and we look forward to continuing to work with this fantastic team on such a vital piece of work that will improve the lives of all those with Inflammatory Arthritis in the UK including those with Juvenile Idiopathic Arthritis (JIA). British Society for Rheumatology #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #InflammatoryArthritis #Donate #Support #JIAVIPResearchPanel #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #JIAResearch #PPIE #BSR

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 

Why we do what we do... “Amelia was so excited to get home from school and find her Little Box of Hope! For the first time in months my child feels she isn’t alone and that brought so much joy to us as a family. Thank you from the bottom of our hearts!” Research. Awareness. And Support. Our core aims. Because we know what it is like to feel alone and isolated facing a diagnosis of JIA. Before Juvenile Arthritis Research charity began 6 years ago, each one of our parent volunteers felt that they had no support and nowhere to turn. That's why we exist. To make life better for those with JIA and their families whilst we also raise awareness and seek a cure for the condition. And we couldn't exist without you. Every single person who donates and fundraises for us has helped Amelia and her family feel less alone as they faced the JIA journey. Thank you for being there for us and thank you for being there for children like Amelia. And a big thank you to Amelia's family for their kind words which mean so much to our volunteers and for sending in these fabulous photos. We love seeing these fabulous 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 

We are so grateful to everyone who is part of our JIA VIP research panel. The panel is open to anyone with a diagnosis of JIA in the UK to join. For those under 16, a parent will be the named person who will join the panel. It is also open to adults of any age who have a diagnosis of juvenile arthritis. The panel is now 1 year old and during that time you’ve participated in focus groups, become part of steering groups for research projects with universities and hospitals, helped several PhD students with their research studies, participated in our research projects that have since been published and presented internationally. You’re supporting high quality research into JIA, helping to eliminate poor quality studies that add little value, and showing that your time and views matter. You’re making a difference by being part of this unique JIA VIP research panel – thank you! We’ve also been able to provide reimbursement for externally funded projects to participants of focus groups and interviews and given away prizes including a Nutribullet, celebrity-signed book, and money-can’t-buy awareness-raising merch. We have a new study coming up very soon so if you’re not yet part of the panel and you have a diagnosis of JIA, please do sign up now at https://lnkd.in/eXbT5JZz We’ve got 3 prizes to give away to 3 separate winners for our next survey. With bake-off fever in full swing, these fabulous cookery books make the perfect Christmas gift or stocking filler for those who enjoy cooking (each winner will win 1 of these prizes). Sign up now to make sure you don’t miss out on these and future prizes and opportunities coming up next year with the JIA VIP research panel. You get to choose which surveys to take part in and we try to keep surveys as short as possible to respect your time. The results are used to better understand your views and what matters to you and to improve JIA services. The prize draw is only available to those who are part of our panel so find out more and sign up now at https://lnkd.in/eXbT5JZz (T&Cs apply and full giveaway details will be sent with the next survey on the JIA VIP panel). #ThinkJIA #PPIE

We met the most amazing children and families yesterday at our Chocolate Workshop. Thank you to all those who came along - it was an absolute pleasure to meet you all and to see the fantastic chocolate creations that your children made. Our face-to-face events enable children and young people to meet others with JIA so that they know they aren't alone. It is a great chance for parents to chat with others who understand what life with JIA is like too. We've held some amazing face-to-face events this year thanks to our volunteer Katherine, who is our local event organiser in Kent. With thanks also to the organisations that have helped to fund some of our local events this year including Asda Foundation, Involve Kent, Tonbridge Lions Club, Kent County Council local member fund and Kent Police. Each of our events has been possible thanks to local funding we received. If you'd like to apply for funding in your local area to organise events in your community, please do get in touch to find out more about becoming a volunteer with Juvenile Arthritis Research. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #Kent #KentCharity

Today, we are sharing another Christmas wish. This one is from 7 year old Aria who says "I wish I did not have arthritis but I could still come to JAR." Aria has been attending our local face-to-face events this year and loves doing the activities and events we've organised for children with JIA. It has helped her to know that she isn't alone in having JIA and to meet other children who also have the condition. Remember, you can share your Christmas wish with us by downloading our template at https://lnkd.in/eXecCJaM It's a great way to help raise awareness of JIA and also help to share information about our Christmas appeal so that these wishes can become closer to becoming a reality as we work towards a cure for JIA. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Christmas #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #Christmas2024 #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #LetsCureJIA

Here is 7 year old Violet receiving her Little Box of Hope pack. Violet's family told us: “Violet was so excited to get home from school to this package today! Such a nice gesture and means such a lot! Thank you so much - such a lovely thing to do.” These free information and support packs are available to families in the UK who have a diagnosis of Juvenile Idiopathic Arthritis (JIA). We have two versions of the Little Box of Hope pack - one is designed for those aged under 10 and the other is for those aged 10 and over that we refer to as a 'teen pack'. The packs contain our 'My JIA' publication to help understand JIA and what to expect when diagnosed with JIA, a copy of a storybook (Kipo for younger children and Peg-leg for older children), copies of 'I have JIA' cards, information about our mental health support and school support, and lots of other practical items to help you get started on the JIA journey; A journey that no-one chooses to be on but one that we hope to make a little bit easier with our Little Box of Hope packs. We don't want any family to feel alone when facing a diagnosis of JIA. It is thanks to everyone that has donated to support Juvenile Arthritis Research or has fundraised to support our work, that makes it possible for us to be here for those affected by JIA - Thank you! For those in the UK with a diagnosis of JIA, you can request your Little Box of Hope pack at www.jarproject.org/hope We love seeing these fabulous 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