One year


Did you know that Juvenile Arthritis Research is one year old? 

It has been an incredible year and we are truly grateful to all those individuals and organisations that have supported us in so many ways...

Families that have shared their JIA stories with us, organisations and individuals in the medical and research fields that have worked with us, the media that have shared news about the JAR project, fundraisers who have raised vital funds for JAR, our trustees who have helped keep our focus on the vision of finding a cure for juvenile arthritis and those children with JIA who we are in contact with who inspire us every single day.

Charity of the Year


Juvenile Arthritis Research were delighted to hear that we have been chosen as one of two Charities Of The Year by Woodlands Primary School in Tonbridge. Children were asked to nominate a charity to support. After carefully considering all the nominations, the School Council (made up of one child from each class) voted to support Juvenile Arthritis Research (JAR), alongside the other charity they are supporting, the NSPCC.

Woodlands school told us, “The School Council read all the letters and had a good discussion as to which charity we felt we would like to support this year. As a group we were very inspired by the reasons that were given by all of the children. However, after a vote we have decided to support the JAR (Juvenile Arthritis Research) Project.”

JAR has two aims: first, to find a cure for juvenile idiopathic arthritis, and secondly to increase awareness of the condition. Juvenile arthritis affects 1 in every 1000 children and young people – that’s around 15,000 children under the age of 16 in the UK. It is a crippling and painful autoimmune disorder that attacks the joints causing pain, inflammation, discomfort, reduced mobility and disability. In some cases it can also attack the eyes causing uveitis which can lead to permanent sight loss if left untreated.

As well as researching a cure for juvenile arthritis, JAR is also raising awareness of the condition because early diagnosis leads to better clinical outcomes. Yet for around 5% of children with JIA, diagnosis took more than 3 years from the point of first contacting a health professional. Increasing awareness will help improve diagnosis times, helping to improve the health of children with JIA.

Mrs Priestley, headteacher of Woodlands Primary School said “We hope that supporting this charity will raise awareness that children and young people get arthritis.”

We are so touched that Woodlands Primary School has chosen to support us as one of their charities of the year this year, and we look forward to working with them to raise awareness of juvenile arthritis and to find a cure for this painful chronic condition.

Age of onset

We undertook a short survey relating to the age of onset of juvenile idiopathic arthritis. Thank you to everyone who took part.

Here's a summary of findings.



“All I want for Christmas…”

Juvenile Arthritis Research is featured in Wellbeing News

"As we draw closer to Christmas, most children are writing letters to Santa with a wishlist of toys and presents that they look forward to opening on Christmas day. For many children with chronic and painful conditions such as juvenile arthritis, their hopes are different. Six-year old Trinity is hoping for her arthritis to go away..."

We are excited to tell you that Trinity's story has been shared by Wellbeing News, helping to raise awareness that children and young people get arthritis. 



Wishing for a cure for Christmas

Juvenile Arthritis Research have been published in Good News Shared


"Trinity, aged 6, only wants one thing for Christmas..."
When the lovely people at Good News Shared heard about the one thing on Trinity's Christmas list, they contacted us and wrote up an article to help spread the word that children and young people get arthritis. We are committed to finding a cure for juvenile idiopathic arthritis, and doing all we can to help make her wish become a reality.

#Run250 finale

Just two weeks ago Alex started his #Run250 challenge. 

Today, he crossed the finish line at the Tonbridge Half Marathon with wife Lynnette bringing the total distance run to 250.8 miles in just two weeks. He has raised almost £1,000 so far which is simply amazing, but it would be fantastic to break that target. 

If you would like to support him you still can at www.give.net/Run250

He completed the final 13 miles today in a very respectable 2 hours 45 minutes, bringing his total running time to 55 hours and 55 minutes and an overall pace of a very impressive 13:23 per mile.

We cannot even begin to thank you enough, Alex and Lynnette - well done for all you have achieved.

Almost there - Run250

Alex and his wife Lynnette, with Trinity (aged 6, who has JIA).

Two weeks ago, Alex started his incredible #Run250 challenge where he was going to attempt to run 250 miles in just two weeks. His aim was to raise awareness that children and young people get arthritis, and to raise funds to support our work in finding a cure for the disease.

Well, his challenge comes to an end tomorrow at the Tonbridge Half Marathon where he will indeed complete the 250 miles as he runs alongside wife Lynnette. 

He has also almost reached his fundraising target, with a massive £900 raised so far, so thank you so much for your support. There is still time to donate if you'd like to at www.give.net/Run250, and please continue to spread the word about what Alex is doing to your friends and family. 

And he's off! #Run250


And he's off! Alex has started his #Run250 challenge where he will be running 250 miles in a period of just 2 weeks. 

On his first day he completed a whopping 22 miles! 

Thank you to everyone who has pledged their support so far. Do take a look at www.give.net/Run250 for more information and help spread the word about what Alex is doing to your friends and family. 

The great thing about Alex's Run250 challenge is that it is helping to raise awareness of JIA. Many people remain unaware that arthritis can affect children. So please do hit those 'share' buttons and help spread the word. 

Boys' Brigade


I was invited to speak about the Juvenile Arthritis Research project at our local Boys' Brigade recently.

It was great to have such an involved and attentive audience as I explained what juvenile idiopathic arthritis is, how it affects children and young people, and the current medications available to children with JIA. 

As well as raising awareness of JIA and the aims of the JAR project, hopefully some of the boys at Boys' Brigade will have gained an understanding of where a career in Science may take them. Who knows, perhaps it will be one of these youngsters searching for a cure for illnesses in future.  

Running 250 miles to find a cure for juvenile arthritis



Alex Shrimpton (aged 26), a member of Hope Church Tonbridge, is running a phenomenal 250 miles over two weeks to raise awareness of juvenile arthritis, and to raise money to help find a cure for the horrible disease.

From 23 September to 7 October 2018, Alex will be completing an average of 18 miles every day in addition to his job as a carer for which he commutes to Winchester. His run will culminate in the Tonbridge half-marathon on 7 October.

Alex is hoping to raise awareness of juvenile idiopathic arthritis (JIA) – a painful autoimmune disorder that affects around 15,000 children and young people under the age of 16 in the UK. JIA is not the same as either rheumatoid arthritis or osteoarthritis (which are more commonly associated with older people). Without adequate treatment, JIA can lead to other health conditions as the immune system attacks other organs, as well as permanent disability and long-term health implications.

At present, there is no cure for Juvenile Idiopathic Arthritis. All current treatments seek to reduce the symptoms of JIA, but are not a cure. Whilst these treatments have beneficial effects in reducing pain and inflammation, and provide some protection against long-term joint damage, they come with their own side-effects and impinge on long-term health of children taking these medications. In around half of all cases, children go into spontaneous remission. But in the other half, they are confined to taking powerful drugs long-term, with all the side-effects and complications that causes.

Alex will also be raising money for Juvenile Arthritis Research, a charitable project aimed at finding a cure for the disease. With the support and endorsement of leading academic researchers, the JAR project works independently to analyse data and information from a wide range of different scientific disciplines and research fields. By bringing together the disparate sources of information, they believe that they will be able to piece together the clues necessary to fully understand the disorder and develop a cure.

Alex says: “I have chosen to run for Juvenile Arthritis Research, as I am friends with a family who have the bravest little girl, Trinity, who is 6 years old and has had JIA since she was two. Unfortunately, however, she needs ongoing chemotherapy treatment to enable her to walk. Trinity still has a long way to go in her treatment but there are thousands of children left to help.  If anyone can help donate I would be most grateful, regardless of how big or small.”

Richard Beesley, the founder of Juvenile Arthritis Research, says: “When Alex told us he wanted to run 250 miles in just two weeks to raise awareness and much-needed funds for our research, I was amazed. Juvenile arthritis is a horrible disease, and there are thousands of children and young people suffering from its effects. We are committed to finding a cure, and are so grateful to Alex for taking on this incredible challenge for us.”

Please help Alex support Juvenile Arthritis Research as they search for a cure for juvenile arthritis - a crippling and painful autoimmune disease. You can give online at www.give.net/Run250. You can also follow his progress on the Juvenile Arthritis Research social media channels.

Hope Church Tonbridge


We were delighted to be invited to speak at Hope Church.

This morning we visited Hope Church Tonbridge and shared with them the background, motivation and plans for Juvenile Arthritis Research.

We are really excited that Hope Church are so supportive of the JAR Project, which aims to find a cure for juvenile arthritis. We will be keeping them updated over the coming months on our progress and plans for the future.

If you know of any churches or organisations who would like to find out more about what we are doing, please get in touch.

JIA Matters


It was great to meet with Emily from JIA Matters this week. Emily created JIA Matters last year, having identified a need for peer-to-peer support for families with a child with juvenile arthritis. The work she is doing, by creating a network of local groups across England and Wales, helps children with JIA and their families feel less isolated and less alone. Giving the support needed at critical times can help overcome difficulties that many families go through when their children have chronic conditions. Learning from others who have been there before really helps.

We spoke about our different projects, about what the JAR Project is aiming to achieve, and about new and exciting plans that Emily has for JIA Matters. It was great to meet with a like-minded and passionate advocate for children and young people with arthritis, and their families.

We look forward to working alongside Emily and her growing network of volunteers at JIA Matters.

Motivation

Our motivation for searching for a cure for juvenile idiopathic arthritis

Trinity recently turned six years old. She was diagnosed with JIA when she was two. Since then, she has had methotrexate injections every week, physiotherapy five times per week, weekly hydrotherapy, blood tests every 2-6 weeks, appointments with various consultants most months, numerous MRI scans, X-rays and ultrasounds, and additional medication to support her weakened immune system and to counteract the effects of her treatment. Yet despite all of this, she remains one of the happiest and joyful children I know. She smiles despite the pain. She laughs despite her weakness. She dances despite the inflammation.

At a recent visit to Great Ormond Street Hospital, we visited the beautiful chapel. There we found the prayer tree, and Trinity wrote this prayer: "Please help me get beta" [better].

She is the motivation behind Juvenile Arthritis Research - to find a cure for juvenile idiopathic arthritis so that she, and the many thousands of children in the UK with the condition no longer have to suffer. So they can get better. So they can smile without the pain, laugh without the weakness and dance without inflammation. We're fighting for you and standing with you, Trinity, for you and for the many other JIA Warriors out there.

EasyFundraising

Please help support Juvenile Arthritis Research when you shop online.

Use easyfundraising to shop with over 3,300 retailers including Amazon, Argos, John Lewis, ASOS, Booking.com, eBay, Boden, and M&S. Every time you shop, you’ll raise a free donation for Juvenile Arthritis Research every time, it’s that easy!

To sign up:

1. Visit www.easyfundraising.org.uk/causes/juvenilearthritisresearch/ 
2. Click 'Join us'.
3. Each time you use easyfundraising to shop online, we get a donation at no cost to you!

Research goals

The research goals for Juvenile Arthritis Research - to find a cure for JIA
The ultimate aim is to find a cure for JIA. Due to the overlapping nature of autoimmune disorders, it is likely that any cure for JIA will also have positive benefits for other related diseases. In targeting a final cure, a large and growing number of interim questions are being documented; many will hold clues to help find the cure.

The primary research method is by reviewing existing literature and liaising with health and research professionals. This includes looking at evidence from within the JIA research arena and, crucially, at evidence from other research fields and disciplines. When detailed research in any area is undertaken, the investigators quite rightly focus intently on their research question; however, there are significant overlaps and interrelations between disciplines, just as there are between systems in the body, and some of this information is missed by the traditional approach. Information from one research field may have benefits and implications in others. Drugs that are shown to work in particular ways for one disease may have an effect in other unrelated diseases that share similar biomolecular pathways. Our research is aimed at pulling information together from these broad areas to help formulate a cure for JIA.
Support us

Support us

Secure online giving at give.net