Juvenile Arthritis Research

We’ve recently had some amazing new volunteers join the team at Juvenile Arthritis Research. As a small charity, we rely entirely on our incredible volunteers who give up their time to make a difference to the lives of those with #JIA. Today, we are welcoming Natalie. Natalie has joined us to support the work we do with schools. She has hit the ground running in getting stuck straight into the vital role of sending out our School Toolkits to schools. She brings a huge wealth of experience from her previous volunteering roles in supporting families in the education environment. Natalie also has a passion for graphic design so will be supporting us in creating new resources and social media content too. Over to Natalie: Hi, my name is Natalie and I live in Kent. I have two boys, one of whom has additional needs. I am really passionate about supporting families, children and young people with additional needs, whether is it disabilities or medical needs, I know first hand the impact of feeling isolated and feeling like you are constantly battling for your child. I have also completed a SEND Law course level 1 (to enable me to have knowledge about the legal system around special educational needs and disabilities, I'm nearly finished with Level 2!). I wanted to volunteer with Juvenile Arthritis Research to help raise awareness of JIA. I understand the importance of awareness to enable inclusivity within the education environment. I want families to be aware that they do not have to wait for a diagnosis to receive support, they should be receiving support if there is a need. If settings are aware of JIA and understanding the signs/symptoms and the impact of JIA, we can ensure that children and young people are getting the right support sooner. Having well informed support in place from an education setting can make such a positive impact on children and young people's futures. Whereas a lack of understanding from others can be really difficult to deal with both at school and in everyday life. I am so excited to be joining Juvenile Arthritis Research, and I hope I can contribute to their fabulous cause and projects. #ThinkJIA #volunteering #charity #kent #KentCharity #education #JIAinSchool #JIAwarrior #MoreThanMyArthritis #Arthritis #ArthritisAwareness

As a small but rapidly growing charity, we have a new volunteer role available. We are looking for someone with PR experience who can help us spread the word about who we are, what we do and to help raise awareness of childhood arthritis using their knowledge and expertise in the PR and/or media sector. This role may suit you if: - You are a freelance PR expert and have some spare time to help on a pro bono basis - Work in PR and your employer gives time off work to volunteer with a charity - Are on a career break and have some time to spare - Are between PR jobs and want to keep your skills up to date - Work/worked in PR and can spare a couple of hours a week to volunteer with us The successful applicant won't need in-depth knowledge of Juvenile Idiopathic Arthritis (JIA) - just a passion for making a difference and helping to make the world a better place for those with JIA - so please do share with any friends and networks to help us find the right person. If this sounds like you, please email michelle@jarproject.org to arrange an informal chat. #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 #Volunteering

Here's 7 year old Rory receiving his Little Box of Hope pack from Juvenile Arthritis Research. His mum says: “Thank you so much for this. He loves Kipo! It’s such a lovely idea to have a story which makes them realise they are not alone.” Our support packs for under 10s contain a copy of the Kipo storybook which explains all about JIA in a child-friendly way. The packs also contain a copy of our "My JIA" information booklet and lots of other items to help make the JIA journey a little bit easier. Digital versions of our books and publications are also available via our website. We know that receiving a diagnosis of JIA is never easy. In many cases, families aren't even aware of childhood arthritis so the diagnosis can come as a shock. You may not know anyone else with the condition and it can feel lonely and isolating. That's where Juvenile Arthritis Research come in. Requesting a Little Box of Hope pack from us (we have packs for children aged under 10 and a 'teen' pack for those aged over 10) is the first step in accessing all of our support services. Our volunteers provide regular ParentZoom sessions, 1:1 support, information and advice for schools and you'll also have access to our peer-to-peer support group. And this is all made possible by everyone who donates and fundraises to support our work. You are literally changing lives by enabling children like Rory and his family to access the support they need when they most need it - thank you! Find out more about our Little Box of Hope packs 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 

We know that your time is precious. We know that families affected by JIA already face additional burdens on their time with hospital appointments and other commitments. We also recognise that your voice - as parents/carers of children and young people with JIA - and your children's voices are the most important part of a research project. That's why we created the JIA VIP Research Panel so that we can share opportunities to take part in high quality research projects where researchers recognise the value of your input. We currently have over 230 families on the panel taking part in activities ranging from surveys, to steering groups, focus groups, research interviews and more! This week we are working with researchers from Lab4Living in Sheffield Hallam University to share a new opportunity. They are looking for children aged 7 and over to take part. We'll be sharing all the details to those in the relevant age group and criteria on our JIA VIP research panel soon so make sure you are signed up. We call it the 'VIP' research panel because YOU are the VIPs. Your voice matters and your opinions count and they shape everything we do. If you are in the UK and your child has a diagnosis of JIA, please do sign up to the panel to hear about this and other future research opportunities. It is completely free to join and there are rewards and incentives for taking part in certain projects. We are so grateful to everyone who is part of the panel and has contributed to our research projects and those of our research partners. Since Juvenile Arthritis Research charity started 7 years ago, we have contributed to research resulting in over 80 scientific publications. This is something that every person involved in taking part in our research projects can be truly proud of. Thank you! Find out more and sign up to the JIA VIP research panel at www.jarproject.org/vip and help improve the quality of research in the field of JIA. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch#JIAWarrior #ArthritisAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #PPIE #JIAresearch TEDx SheffieldHallamUniversity Lab4Living British Society for Rheumatology

"What would you tell your younger self?" Despite the term 'Juvenile' in the name, Juvenile Idiopathic Arthritis (JIA) is a lifelong condition lasting into adulthood. The 'Juvenile' part of the name refers to the onset of symptoms being before the age of 16. Our research* has shown that 52% of those with JIA were incorrectly told their diagnosis has changed post-16. In addition, 11% of patients with a diagnosis of RA actually had paediatric-onset JIA. So it is really important for those with JIA to understand their diagnosis and to know that upon reaching adulthood, they are an "adult with JIA" and that their condition doesn't change its name to another form of arthritis. In many cases, those with JIA will reach medicated remission where their condition will be well-controlled with medication. In some cases, they may reach unmedicated remission and be able to come off medication for a while or permanently. But it is important to know that they still have a diagnosis of JIA in case they flare again in future so that they can get the right treatment and support from healthcare professionals. As well as being here to support children and families affected by JIA, we are in contact with adults with JIA too as our little charity exists to support EVERYONE affected by JIA - not just those under 16. So today, we are asking the question to those who have lived with JIA for a while, what advice would you give to your younger self? Drop a comment below and we'll aim to share some of your tips and wisdom throughout Juvenile Arthritis Month in March. * https://lnkd.in/efcjwwzf #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 British Society for Rheumatology EULAR - European Alliance of Associations for Rheumatology

It's coming! There's less than a week to go until Juvenile Arthritis Month in March. We're bringing the UK in line with other parts of the globe to raise awareness of JIA in March with JAMJAR which stands for Juvenile Arthritis Month by Juvenile Arthritis Research. Get ready for a whole month of events, activities and awareness-raising social media content. YOU can get involved too. Here's how: - Visit www.jarproject.org/jamjar and download our awareness-raising poster. Print it and fill it in and then share a pic on social media. Remember to tag us if you'd like us to share it (we're only able to see public profiles, so you can also email it to kipo@jarproject.org if you'd like us to share it) - Arrange your own event to raise awareness and funds for Juvenile Arthritis Research. You can find all our fundraising resources online at https://lnkd.in/eKrtSeaf (just click on in-person fundraising for all our downloadable resources). If you don't have access to a printer, you can request a paper copy to be sent to you. Please only request a pack if you are planning a fundraising event as it takes up valuable volunteer time and resources to send a pack out. - Remember to let us know what you are planning and send us any photos of your events that you'd like us to share. Please remember to let us know how much you've raised too, so that we can send you a thank you! It's a great idea to contact your local media, radio and press to tell them about your event. They may feature you and help raise awareness of JIA. We're happy to be contacted by them too for quotes and interviews so please do pass on our details so they can find out more. - Share! Share! Share! By liking, commenting and sharing our social media posts throughout March, you're helping to spread the word and raise awareness of JIA. - Sign up to the WORD day webinar at www.wordday.org It's happening on 18th March on World yOung Rheumatic Diseases day. WORD day remains at the heart of Juvenile Arthritis Month so don't miss this fantastic webinar. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #ThinkJIA #MoreThanMyArthritis #WordDay2025 #arthritis British Society for Rheumatology Cassie and Friends: A Society for Children with Juvenile Arthritis and other rheumatic diseases Dr. ANGELA MIGOWA Deniz Bayraktar Summer A. Susanne (Susa) Benseler Deborah A Marshall NCEPOD National Voices Children and Young People's Mental Health Coalition (CYPMHC)

We absolutely love seeing photos of your children receiving their Little Box of Hope support packs. Here's 1 year old Florence with her Little Box of Hope bringing a big smile to her face. Her mum told us: "We have just received our Little Box of Hope. So much more than I was expecting! Wow!  Florence loves the stickers and was trying to put one on the monkey. Really informative, look forward to reading everything.  Thanks again and thankyou Abbie for such a carefully prepared package.” Abbie is the young person who came up with the idea of A Little Box of Hope and together with mum, Sam, continues to send every box for younger children out to them. Abbie loves hearing from those receiving a Little Box of Hope and knowing how much it helps a family when their child is first diagnosed means a lot to our volunteers. And of course, we are so grateful to every single person who has donated to us, whether it is via a one-off donation, supporting our annual Christmas appeal or becoming a regular monthly donor - it all helps hugely. If you have fundraised for us, we are incredibly grateful. It is thanks to you, our donors and fundraisers, that we can be here for children like Florence and to be able to provide the information and resources needed at the time of diagnosis. Find out more about our Little Box of Hope packs 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 

"Oli wants people to understand that arthritis doesn't just affect older people, but can affect younger people who are fit and healthy." Oli's JIA story has been featured in the Driffield & Wolds Weekly press this week. Oli is planning an incredible fundraiser at his rugby club in March to coincide with Juvenile Arthritis Month. He's passionate about raising awareness that arthritis can affect anyone of any age. We know from our own research* that awareness levels of childhood arthritis remain low and that this has an impact on causing delays in diagnosis and misdiagnosis, so events and initiatives like the one Oli and his family are organising are vital to helping to raise awareness levels in the community. We wish Oli the very best of luck with his event and hope that you'll soon be back to playing rugby yourself. Thank you for all your support of Juvenile Arthritis Research - together we can make a difference in raising awareness whilst we work towards a world where no child has to suffer from arthritis. *DOI: 10.1093/rap/rkad099 - Beesley & Beesley, Rheumatology Advances in Practice Journal #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 #driffield #rugby Clare Garrick

Registration is now open for the FREE #WORDDay2025 Webinar! We're delighted to be once again supporting World yOung Rheumatic Diseases day (WORD day) WORD day happens on 18th March each year to raise awareness of childhood rheumatic conditions and the annual webinar is a key part of it. It will be happening at the heart of Juvenile Arthritis Month in March. Don’t miss this chance to gain insights, ask questions, and connect with the community. Register for FREE here: bit.ly/wordday2025 The webinar is at 6pm UK time on Tuesday 18th March 2025. Let’s work together to raise awareness and support children worldwide. #ThinkJIA #Lupus #JIA #ChronicIllness #WORDDay2025 #SpoonieLife #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness

A round-up of the amazing poems and quotes shared for Children's Mental Health Week last week is now available on our website at https://lnkd.in/e9zUeKVB Thank you to everyone who shared these poignant and powerful insights into life with JIA. It takes courage to do so and we know from all the comments, likes and shares on the posts that they resonated with so many people. It is always a balancing act for us as a charity bringing hope to those living with JIA whilst also being real about the challenges that life with JIA presents. We do our best to get it right by sharing what you want us to share. Amidst the positivity of seeing so many inspirational children and young people, we recognise that the reality of living with JIA can at times be incredibly tough. We know, because all our volunteers have lived-experience and understand what it is like. We're not mental health experts and we can't give medical advice - your own medical teams are best placed for any questions about medications and treatments. However, if you ever need a listening ear from someone who understands, our volunteers are just an email away. #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 Place2Be Children and Young People's Mental Health Coalition (CYPMHC) British Society for Rheumatology NCEPOD