Tag Archives: Cardiff

Cardiff Quiz Evening a Success

Les Quizerables accept their prize

Les Quizerables accept their prize

On 28th February we held our first quiz evening at the Village Hotel in Cardiff.

Teams competed for the title of “Cardiff’s Smartest”, answering questions on topics from sport to food and drink. There was even a taste testing round where teams had to guess the branded product.

Cerebra Ambassador Sian Taylor attended the evening to share how Cerebra has helped her family since the birth of her son Ollie, who has the rare condition Wolf Hirschorn Syndrome.

In addition to the quiz, we also held a hugely successful raffle.

The winning team, who went by the name Les Quizerables even kindly donated their £300 prize back to Cerebra.

The event raised nearly £800 in total and everyone at Cerebra would like to say a massive thank you to everyone who made the event a success.

Poppy’s Triathlon Dream

Go Poppy!

Go Poppy!

Eleven year old Poppy Jones from Abergavenny has achieved her dream of competing in a triathlon with her dad, Rob.

On 26th June 2016 Poppy Jones and her dad Rob took part in the Cardiff Triathlon together to raise money for Cerebra. But they faced an additional challenge – eleven year old Poppy has cerebral palsy and Rob pushed and pulled her around the course using custom made equipment specially designed by our Innovation Centre.

Eleven year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through. Dad Rob explains “there have been times when it has been very touch and go and we feel very lucky that she has been with us for the last 11 years”.

Poppy takes to the water.

Poppy takes to the water.

But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit.

Rob, meanwhile faced a challenge of his own in getting fit for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. At Christmas he could only manage two lengths of the local swimming pool and is using his ancient bicycle to train.

The cycling stage

The cycling stage

Mum Rachel, along with the rest of the family and friends, were right behind Poppy and Rob and are fully supporting them all the way, providing all the back-up and help they need. Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

Crossing the finish line

Crossing the finish line

The project has been a huge challenge for Cerebra’s Innovation Centre who designed and made the equipment that Rob and Poppy needed to take them to the finish line.

In this video, Rob and Poppy tell their story in their own words:

We would love it if you could support Rob and Poppy! If you would like to donate please visit www.justgiving.com/Rob-Jones42.

We would like to thank the following companies whose sponsorship has helped to make Poppy’s dream a reality: Dischro Creative white

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Carmarthen Business Supports Poppy’s Dream

Ron handing over the bike to Rob

Ron handing over the bike to Rob

Cerebra is making Poppy’s dream come true – with the help of Carmarthen based businessman Ron Mounsey and his daughter Pippa.

On 26th June 2016 ten year old Poppy Jones and her dad Rob will take part in the Cardiff Triathlon together to raise money for Cerebra. But they will face an additional challenge – ten year old Poppy has cerebral palsy and Rob will be pushing/pulling her around the course using custom made equipment specially designed by the charity’s design team.

Dad Rob is facing a real challenge in preparing for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. A few months ago he could only manage two lengths of the local swimming pool, didn’t own a pair of running shoes and is using his ancient bicycle to train.

On hearing of Rob’s predicament Carmarthen businessman Ron Mounsey and his daughter Pippa kindly offered to donate a bicycle so that the pair could complete their challenge. They presented the bicycle to Rob at the McDonald’s restaurant in Carmarthen on 22nd April.

Cerebra’s Innovation Centre, a partnership project with the University of Wales Trinity St David, are designing and building the custom-made equipment that Rob and Poppy will need to take them to the finish line: a boat that can be pulled for the swim and a chair that can be pushed for the running element and attached to the bicycle for the cycling phase. Now that they have a suitable bicycle the Innovation team can complete their work and the exciting designs will be unveiled soon.

Ten year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through.

Dad Rob explains, “there have been times when it has been very touch and go and we feel very lucky that she has been with us for the last 10 years”. But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit. Rob explains, “Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

Cerebra, Rob and Poppy are also grateful to Beiciau Hobbs in Carmarthen for donating a cycle helmet.

If you would like to support Rob and Poppy please visit www.justgiving.com/Rob-Jones42. Or if you would like to sponsor the project in any way please get in touch with us on 01267 244221.

You can follow their story on social media #Poppysdream.

Why I Ran for Cerebra by Ben Horne

Ben during the Cardiff World Half Marathon

Ben during the Cardiff World Half Marathon

Ben Horne completed the Cardiff World Half Marathon on 26th March, raising over £150 for Cerebra. He gave us his own frank and honest account as to why he runs and why he wanted to raise money for Cerebra.

“My name’s Ben Horne and I’m a Personal Trainer based in Newchapel, Pembrokeshire. My passion is guiding people to success in the world of physical training and personal self development. I’m on a journey myself, and I’m just so happy to be able to help others along the way.

I have a bug. I was 15 years old when I got ‘the bug’. I wasn’t particularly sporty in school, but discovering a person could overcome great challenges with simple grit and determination sparked something in me that’s never gone away.

I fell in love with physical training and 15 years ago I threw myself headlong into it. It’s been just as much a mental/emotional journey and I think that’s why it’s been so fascinating to me. I’ve seen myself try greatly, fail well and succeed spectacularly. It’s all character building I suppose!

I don’t particularly specialise in running but my philosophy suggests that most healthy individuals should be able to run 13 miles without major problems. I was asked to run for Cerebra late last year in the Cardiff World Half Marathon. My first thought was that this wasn’t a convenient proposition, but as I thought it over I concluded that brain dysfunction was infinitely more inconvenient. My perspective on convenience shifted.

I have a nephew (hello Harvey!) with autism so this was definitely a charity I had a connection to. I knew there were probably plenty of likely candidates out there who would readily run for this charity and it’s work, but that wasn’t the point. I was being asked. Me. I resolved that if anyone should run this, it would be someone well placed to take advantage of their health. I knew I was one of those ‘someones’.

For philosophical reasons, it had become personal. If I turned this call down I felt like I would be forfeiting my integrity. So I agreed to run and I began designing a training schedule to rehearse for the race. I had run a little cross country in school and the opportunity for some longer distance runs appealed to me. Usually my training included short, sharp runs, never usually more than 1-2 miles. And even then, the run would normally be mixed up with weightlifting activities and gymnastics (I do CrossFit for my general physical preparedness).

The weeks passed, the sponsorship money came in and the local countryside lanes became very familiar! Race day came around quickly and I took every opportunity possible to live in the moment, taking in the atmosphere and the experience as a whole. I’d never run 13 miles before. I was relying on the experience and knowledge behind my training to see me through. 90% of my training runs were 4 miles long. Theory said I should manage the distance with relative ease because of the type of training I’d been doing, the lifestyle I live and the ‘barefoot’ style I run with – but the problem with theory is it’s only theory until it’s tested! That test began at about 14:20 on Saturday March 26th.

Well I ran the distance, and the theory was spot on. I covered every mile with a consistent and comfortable pace. My primary objective was to complete the course. My secondary objective was to run at my leisure the whole way. Afterall, I’m not a competitive runner. Just a ‘someone’ with their health. The run was a success and easy enough. The experience was fantastic. I came in in under 2 hours which I’m quite happy with really. I wondered what I could do if I were competitively running!

I’d urge anyone who’s so much as curious to do something like this themselves for charity. To use your body to do some good in this world. And now I’ve archived that half marathon in the mental-vaults of experience hoping to draw upon it in future in my continuing work in helping others achieve their goals.”

To find out more about Ben, check out his website.

You can find out more information about how you can take part in an event for Cerebra on our Run for Cerebra page or you can contact Cecilia Bufton at ceciliab@cerebra.org.uk or 01267 242586.

Group of Runners get Ready for the Cardiff World Half Marathon

Neil, Emyr and Aimee with Sir E. Bear

Neil, Emyr and Aimee with Sir E. Bear

A group of runners from Carmarthen are getting ready to take part in the prestigious Cardiff World Half Marathon on Saturday 26th March.

The event is special because it is the first time the IAAF World Half Marathon Championships have been held in the UK since 2009 – when Birmingham hosted the event. The fact that the race is once again coming to the UK is huge because it means that some of the world’s top athletes will be on our doorstep. It also means that budding runners can test their skills against the likes of Mo Farrah.

Cerebra are very proud to have a group of seven runners taking part in the event in order to raise money for the charity.

Neil Lightfoot, Jorge Collings, Ben Horne, Emyr Evans, Jacob Booth, Aimee Booth and Nick Bates will all be dusting off their running shoes and hoping to make it around the 13 mile course – all while raising money for Cerebra.

Ben said: “When I heard that Cerebra needed representation for the Cardiff half Marathon in March, I felt some personal responsibility to answer the call. I’m not a dedicated runner, but I’m ready, willing and able, and I’m already preparing for this race. I’m going to run simply to represent Cerebra and support their work.”

If you would like to sponsor one of our runners, you can do so by clicking on one of their names above or you can donate on our website or by texting CERE12 and the amount you want to donate to 70070.

Toddle, Waddle, Run half marathon success

Sarah and Annaleigh at the Cardiff half marathon helping support Lucy to toddling victory!

Sarah and Annaleigh help support Lucy to the finish line!

We recently launched our Toddle, Waddle, Run campaign as part of the Cardiff Half Marathon, which this year included a toddler dash and mascot race as well as the main event.

On the 3rd October our youngest ever fundraiser, 21 month old Lucy toddled with the best of them and ended up in a very respectable third place. She was helped along by Annaleigh and Sarah – who was herself preparing to take part in the half marathon the following day.

Saturday was also the day of the mascot race where Cerebra’s infamous mascot Sir E. Bear was hoping to waddle to victory. He had been training hard and had his sights set on the win but sadly it was not meant to be and once again, he came last.

Sunday the 4th October was the day of the half marathon itself and Sarah, who is Cerebra’s Trust Fundraiser, did us proud – completing the race in an impressive 02:15:05.

Everyone at Cerebra would like to say a huge thank you to the team for all of their efforts – even Sir E. Bear!

Don’t forget, you can still show your support by sponsoring the team. Just text CERE12 and the amount you would like to donate to 70070. Thank you!

Toddle, Waddle, Run with Team Cerebra!

You may have already started following Cerebra mascot Sir E. Bear’s progress as he trains for the Swansea Mascot Race. Now, he is being joined by two new team mates making up team Toddle, Waddle, Run! as part of Cerebra’s Cardiff Half Marathon effort.

This year’s Cardiff Half Marathon is made up of several smaller events as well as the half marathon itself including a toddler race and the mascot run during which Sir E. Bear will be doing his best to waddle to victory!

Lucy getting ready to run

Lucy getting ready to run

Our team toddle entrant is 20 month – old Lucy from Cardiff. This toddling princess is getting ready to toddle the 100 metre in style and is aiming to be the best dressed toddler on the day!

Our runner who will be completing the whole 13.1 miles is Sarah Robey – Cerebra’s very own Trust Fundraiser. Sarah is no stranger to running long distances having just completed the Severn Bridge and  Chippenham half marathons within seven days. She will now be taking a rest to get herself ready to represent Cerebra and Team Toddle, Waddle, Run.

Sir E. Bear gearing up for the mascot run

Sir E. Bear gearing up for the mascot run

Finally, Sir E. Bear will be representing Team Waddle. What Sir E. Bear lacks in waddling skill, he makes up for in enthusiasm and has set himself the admirable goal of not coming last this year!

Team Toddle, Waddle, Run would appreciate your support ahead of race weekend. The toddler and mascot races take place on 3rd October and the half marathon itself is on the 4th October. Everyone is welcome to come down and cheer them on!

 

If you would like to sponsor the team you can do so by texting CERE12 and the amount you would like to donate to 70070, by calling 01267 244221 or donating through Just Giving using the button below.

Donate with JustGiving

 

Lawyers needed

cardiff uniThe pro bono programme at Cardiff Law School needs you!

We are looking for lawyers (possibly retired or who have had to give up (or put in abeyance) a legal career due to caring responsibilities / other interruptions) who are interested on a voluntary basis in getting involved in lending their skills to mentor students on a pro bono programme.

The programme is supported by Cerebra a unique charity supporting disabled children and their families.  As part of the programme students prepare legal opinions on commonly occurring problems disabled children and their families experience in accessing their statutory rights to health, education and social care support services.

We are in need of people with legal skills / experience to work with the students: reading and critically analysing their draft opinions and ensuring these are of suitable quality.

It is not essential to have a detailed knowledge of health, education and social care law as the programme is supervised by Law School staff and an expert team from Cerebra.  What we need is people with legal skills who understand the craft of drafting legal opinions / advice letters.

If this is of possible interest – please make contact with either:

and very many thanks. 

Short Breaks and the Law – Ron’s Story

criminal-law-policyWe share the story of Ron who has benefitted from the work of the Cerebra funded Legal Entitlements Research Project based at Cardiff Law School.

Short breaks care is often a vital support need for families with disabled children. Unfortunately some local councils do not always appreciate that they are under a legal obligation to provide such support where it is required.

The ‘Legal Entitlements Research Project’ at Cardiff Law School, which was established with funding support from Cerebra has published a Digest of Cases it has considered – and this includes advice concerning access to respite care. ‘Ron’s story’ (not his real name) is summarised below:

Ron is seven and has Global Development Delay (GDD), the symptoms of which have become increasingly difficult for his parents to manage as he has matured. The symptoms include difficulties with behaviour management and aggressive episodes which are having an adverse impact on his siblings and the wider family unit.

Ron’s social services’ assessment identified a need for him to be cared for whilst his parents had a break (i.e. a need for ‘respite care’). Ron’s parents asked for a Direct Payment to enable them to purchase this care themselves but this was refused by the council because Ron had not had a formal diagnosis of having a ‘disability’.

The legal opinion provided by the Legal Entitlements Research Project clarifies the duty on councils in such cases and in particular that in this case the requirement for a formal ‘diagnosis’ was not lawful; that parents in such cases have an enforceable legal right to a direct payment and that the council had failed to advise them (and their siblings) that they were also entitled to have their needs as ‘parent carers’ / ‘young carers’ assessed.

The full case Report is at www.law.cf.ac.uk/probono/Direct%20Payments.pdf

Further Information

The Legal Entitlements Research Project

For information on how to access the Project, see:www.cerebra.org.uk/English/gethelp/legalhelp/probonoscheme/Pages/default.aspx

The Digest

A copy of the full Digest (which includes Ron’s case) is at www.law.cf.ac.uk/probono/2013%20Digest%20of%20Cases.pdf

 

Legal Entitlements Research Project Update

Booklet with reading glassesOur new on-line request form makes it easier for families to ask for help under our Legal Entitlements Research Project and to understand how the project can help them.

Cerebra’s Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurological condition and who need help to resolve a legal problem regarding access to health, social care or (to a more limited extent) education support services.

Law students at Cardiff University (under the supervision of qualified staff, firms of solicitors and other disability organisations) can offer legal support to families by providing a written opinion which explains the relevant law and a draft letter which parents can send to the relevant local authority or health body.

As well as providing practical assistance to families, the legal advice scheme also forms part of a wider research programme, under the direction of Professor Luke Clements as our Academic Chair.

The aim of the research programme is to understand why public bodies sometimes fail to discharge their legal duties and identify effective ways of overcoming these problems, so that we can better equip families to resolve problems with the statutory agencies, and enable statutory agencies to improve their decision-making processes and reduce the likelihood of similar problems arising in future.

We have recently developed a new on-line request form for parents who would like to be considered for support from the Project. We hope that the new form will help parents to frame their request and enable us to capture all the relevant information at an early stage. Please let us know if you have any comments or queries about using the online form.

We have also published Project Guidelines which explain how the scheme works in more detail and describe the type of legal problems we may be able to help with.

If you have a legal question about your child’s access to health, social care or education services, please have a look at the Project Guidelines for further details and complete the online request form available on our website.