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The Under 17 Car Club’s chosen charity is currently The TCT, and over the years we have raised over £100k for them. However, it’s not set in stone and we have been asked by a member’s family if we would consider raising money for a local charity who also look after teenagers.
 
It’s a big change for the club, however the family have given so much over the years, always they’re putting out cones, helping in the background, demo drives, these are great people. For now, I won’t mention any names, although the family is known to those of you who are members of the members FB page.
 
 Firstly, a bit more about the two charities to help you make up your mind, and then at the bottom of the page there is a voting form where you can record your preference. Only Members of the car club can vote on this so members, associate members and volunteer members each have a vote. That does mean you may need to complete the form several times (eg for member(s) and associate). We need to be able to identify you to ensure there is no question of the vote being abused or rigged, but we will then anonymise which way you actually vote. For those that prefer, you can also print off the form and fill it in on paper and hand to a club official at the next event. We do still need to be able to identify you though to ensure your vote counts.
If we were to change things, how would you like it to change?
 
In November 2022 our car club member became really ill with stomach issues. It got progressively worse and by Christmas he’d lost more than 2 stones in weight (25-30% of his body weight). He was referred to a paediatric gastroenterologist and in January of this year was diagnosed with severe Crohn’s Disease – classified as an Inflammatory Bowel Disease (IBD). He was lucky.
Why lucky? In the last 20 years, cases of IBD in children have doubled. The average diagnosis time is months, if not years. There are simply not enough paediatric gastroenterologists to cope with the onset of cases. In fact, Bristol Children’s Hospital cover the entirety of the South West, from Wiltshire to Cornwall.
For parents, diagnosis is just the start. IBD is caused by the immune system – one of the most complex areas of medicine. Where do you even start to help and support your child?
That’s where CICRA steps in. CICRA (Crohn’s in Childhood Research Association) is a charity that helps fund research and supports children and their families in understanding and living with Inflammatory Bowel Disease. The charity has simply been amazing and we would have struggled without the help.
The way the charity helps is best described by the charity goals. The 10 year goals of CICRA are:
1- Advances due to research mean children are given more personalised treatments, with limited side effects
2- All children and families get the information they need, when they need it, and in the format that works for them
3- All children with IBD and their families know where to turn for support and get help straight away
4- The needs of children with IBD are always understood and supported, in healthcare, education and society
How did CICRA help us?
Firstly, education. Imagine being able to spend a whole day with researchers, doctors, other parents and have presentations, workshops and be able to ask any question. That kind of help is invaluable.
The hope of better drugs and more doctors. Some of the research noted is funded by CICRA and importantly, they also pay to train extra paediatric gastroenterologists which will help get young people diagnosed faster. We’ve come a long way – when CICRA was formed 45 years ago, there were no paediatric gastroenterologists at all!
He is currently being treated with lab-made antibodies and we’re sure there are more amazing drugs to come.
A support network for children at their lowest. Teenagers would often rather talk to each other than their parents. CICRA runs a support network for the kids and teens: hosting separate groups at meetings and also an e-pal (online friends) scheme. He found this really helpful when he was stuck at home and missing his friends. Besides, friends don’t really understand why you’re ill and how you feel.
What’s it like to have IBD?
To start with, you never really look unwell (unless you’ve lost nearly a third of your body weight), so people don’t know you’re ill. Inside, your immune system is attacking your digestive system (not just the bowel), causing ulcers and bleeding. You can’t digest food properly, so you have very low energy, and you need to use the toilet a lot, which makes going out really difficult. It can affect your learning (brain fog) and joints, so it’s not just the stomach. The medication used to treat it can have nasty side effects and can also mean you’re susceptible to every virus doing the rounds. He has to have regular blood tests and inject his medicine, so has had to deal with his fear of needles.
Is there a cure?
No, but you can control it. You need to take special drugs that suppress your immune system to stop it attacking you. However, the immune system is very complicated and drugs don’t always stay effective. So new drug research is being done all the time.
He is now on his 3rd different treatment as the first two didn’t work fully. It’s been a journey.
 
The TCT, our current Charity of choice.

Teenage Cancer Trust grew out of the dedication and passion of a group of women, which included life president and founder Myrna Whiteson MBE, who fundraised for a children’s intensive care heart unit at Guy’s Hospital in 1989.

The group met a mother whose 13 year old son had cancer and was being treated both in a children’s ward and alongside older people in an adult oncology ward. Not only was he facing the trauma of cancer and cancer treatment, but he was isolated from other young people going through the same thing.

They set out to provide a ‘teenage environment’ to help young people with cancer and raised the £330,000 needed to fund it. On 22 November 1990, Teenage Cancer Trust’s first specialist cancer unit at the Middlesex Hospital in London was officially opened by Sarah Ferguson, Duchess of York. At that point, the group imagined their work was done.

Myrna said:

“We never dreamed back then in the early 90s that Teenage Cancer Trust would become what it is today. We had no great vision of the future at that stage, but just wanted to do something that would make things better for young people experiencing the great burden of cancer diagnosis and treatment.”

Teenage Cancer Trust has grown to become a global leader in the field of young cancer care, our pioneering model admired the world over. The lives of thousands of young people have been transformed by specialist care and support by highly experienced experts.

“The Teenage Cancer Trust unit in Sheffield felt really welcoming and this made such a difference; the nurses were great and made me feel at home and I met other people who were going through what I was experiencing.”

– Julia, diagnosed with Ewing Sarcoma

As well as our network of care and support services in hospital units and via hospitals and homes across the UK, our work has grown to include:

Find Your Sense of Tumour, an annual conference for young people with cancer
The biennial International Conference on Teenage and Young Adult Cancer Medicine for teenage and young adult cancer specialists
a funding programme for research and the further education of health professionals.

https://www.teenagecancertrust.org/