Category Archives: Events

Accessing Public Services Toolkit Workshops

Our Accessing Public Services Toolkit Workshops are designed to help families access the services that their children need, and are entitled to.

Our popular Accessing Public Services Toolkit aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. The toolkit aims to unpick these problems and to develop effective strategies for resolving them. You can download the Toolkit here.

These free workshops will use the information and resources in our Accessing Public Services Toolkit to help parents and carers, and the professionals who support them, to access the services that their children need. They will be delivered by a Cerebra professional together with a parent/carer who has first hand experience.

Each workshop lasts for around 3-4 hours and includes a presentation on the toolkit and case studies for group work. There will also be the opportunity to discuss and share experiences. The workshops are provided free of charge.

Workshop dates and locations

18th September 2018 – Brecon
20th September 2018 – Selly Oak, Birmingham
26th September 2018 – West Yorkshire
5th October 2018 – Twickenham
10th October 2018 – Northumberland
24th October 2018 – Somerset
14th November 2018 – Torquay
21st November 2018 – Norwich
29th November 2018 – Sutton, Surrey
5th December 2018 – Sheffield

If you would like to book a place at any of the above workshops please contact Beverley Hitchcock at beverleyh@cerebra.org.uk.

Coming soon:

We’ll bring you more details of these workshops as soon as they are confirmed:

  • Devon
  • Lincolnshire
  • Warwickshire
  • Leicestershire
  • London
  • Coventry
  • Berkshire
  • Cornwall
  • Hampshire

We are currently looking for groups to host our Problem-solving Toolkit workshops. All we would ask is that the group cover the hire of a venue (preferably with an overhead projector and wifi access), refreshments, publicity and bookings.

If you are interested in holding a workshop, then please contact Beverley Hitchcock at beverleyh@cerebra.org.uk.

Cerebra’s Christmas Dash!

We recently celebrated our 15th birthday with a festive fancy dress dash in Carmarthen! We had lots of fun meeting local families and supporters who loved joining in with the Christmas fun.

There were three fancy dress races on the day starting with a Toddler Run for the little ones, a 100m Sprint for the more athletic and a Family Fun Run for everyone to get involved in. The costumes were great with some runners bedecked in tinsel, some festive superheroes and even a family of reindeer! The cast from the local panto also joined in the fun – with great rivalry between the Dame and King Rat!

The town’s Mayor, Cllr Wyn Thomas, presented prize hampers for 1st, 2nd and 3rd place in each race along with one for the best fancy dress.  The hampers were made up of goodies donated by local shops and businesses.

Families could also visit Father Christmas and his elf in his grotto and enjoy mulled wine, hot chocolate and mince pies, kindly donated by the local Co-Op store.

Our Event’s Co-ordinator, Cecilia Bufton, said: “we wanted to make this a lovely festive fun event that the whole community could get involved in, while raising awareness and funds for the great work that we do and celebrating our 15th birthday”.

We’d like to thank all the local businesses for their sponsorship and support, the Town and County Councils for their assistance, the Town Mayor for giving his time and students from the University of Wales Trinity St David for their photography skills.

Thanks to everyone who joined in the fun and made this event such a great success – we’ll see you all again next year!

Cerebra at the House of Lords

12189901_loresOn 26th October we held a Charity Reception at the House of Lords in London. This prestigious event was a great opportunity for us to raise awareness of the work that we do to help families with children with brain conditions discover a better life together.

The two hour programme was packed full of speakers to showcase the work that we do and to highlight why that support is needed.

The event began with a celebration of Rob and Poppy’s triathlon success earlier this year. Cerebra’s Innovation Centre take pride in designing cool products for cool kids, helping children with brain conditions to take part in activities that others take for granted. This year the team designed all of the equipment needed to take 11 year old Poppy Jones, and her dad Rob, to the finish line of the Cardiff Triathlon.

We also heard passionate and inspirational speeches from two young people. Mair Elliott was diagnosed with autism aged 15 after experiencing severe mental health problems. She is passionate about promoting a better understanding of the condition and spoke powerfully about her experiences. Sixteen year old Eve Hamilton helps care for her brother Cole who has a rare genetic condition. She spoke movingly about what it’s like to have a family member with a disability and about being a young carer.

Dr Nigel Simpson is Cerebra’s Academic Chair at the University of Leeds. Nigel explained to guests about the pioneering work of his research team who are aiming to reduce the number of premature births by improving the prediction of mums at risk of early delivery, so that fewer babies suffer the complications of being born too soon. He was followed by Tor Goodman, who is a Cerebra Ambassador and mum to two daughters, Alice and Hannah. Both girls were born prematurely and Tor spoke about her family’s experiences of premature birth and the impact it has had.

Lynn and BettyA special award was made to Lynn Palfreyman and Betty Blyth who run a small shop on a campsite in Burton Constable in Yorkshire. They have had a Cerebra collection box since 2000 and to date have collected an incredible £27,469 in spare change. Brothers Dylan and Ryan Hooper presented them with an award to recognise this incredible achievement and thank them for their support.

Isaac with the 50 Schools Challenge trophy

The event was also an opportunity to thank the Cathedral School in Cardiff who were the winners of our recent 50 Schools Challenge, raising £1421.43 for Cerebra. Isaac Taylor, who had suggested his school took part in the challenge, attended the event to received the winners trophy.

We would like to thank our event host Lord Kamlesh Patel and also Matthew Price who was our MC for the day. Thanks also to the Angelicus Chorale from the Hywel Girls’ Choir & Hywel Boy Singers, who provided the musical entertainment for the event – the group are proud to be Ambassadors for Cerebra.

We are also grateful to the Lottery Fund for sponsoring the event and to our corporate partners: Hyphen Law, Deloitte, Leigh Day and Claims.co.uk.

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The Earl of Wessex to officially open UWTSD’s ALEX Building

The ALEX Building

The ALEX Building

Cerebra and the University of Wales Trinity Saint David will welcome The Earl of Wessex to the University’s Swansea College of Art and Design ALEX Building on Thursday, September 29, to officially open the Building.

The Earl of Wessex will be greeted and welcomed by Professor Medwin Hughes, DL, UWTSD Vice-Chancellor, before embarking on a tour of the building, where he will meet staff and students.

His Royal Highness will also visit The Cerebra Innovation Centre (CIC), which was established in 2004 as a partnership between the University and Cerebra, a charity working with brain injured children. From its base in ALEX, the centre designs and manufactures individual products to assist children living with serious life-limiting conditions. Profits from commercialised products are fed back into CIC’s R&D activities.

The visit will conclude with the unveiling of a plaque by The Earl of Wessex to officially open the ALEX Building.

Dr Ian Walsh, Dean of UWTSD’s Swansea College of Art and Design said: “The visit by The Earl of Wessex to the ALEX Building marks the end of a journey which started in 2006. Over the last 10-years this magnificent historic building has been transformed. Its original vision as a beacon of excellence has been restored and once again it occupies centre stage as a seat of creative learning in the heart of Swansea.”

Chris Jones, CEO of Cerebra, said: “The Cerebra Innovation Centre (CIC) based within the ALEX building is an initiative created from Cerebra’s partnership with the University.  We created the centre in order to provide high quality, innovative product solutions to help the families of children with a variety of brain conditions. Cerebra is a national charity for brain injured children and the CIC forms an extremely important part of our work.  Innovative product solutions are all about discovery. There is a certain magic in that and Cerebra is all about joining with families in order to take that journey of discovery. We listen to families, face up to their challenges, believe that for every challenge there is a solution and then discover that solution together. The Cerebra Innovation Centre epitomises that philosophy. It truly is a great innovation in itself.”

CIC full mainThe ALEX Building plays host to a number of important centres of excellence. It provides state-of-the-art accommodation for Wales’ oldest Art Foundation Programme. UWTSD is the only University in Wales still running its own in-house art foundation which remains a key point of entry to Swansea College of Art.

Swansea Bay has the largest cluster of independent architectural glass practitioners in Europe. The Architectural Glass department at UWTSD, which celebrates its 80th anniversary in 2016/17, is unique in the UK and has a truly international reputation. Supporting the creative industries is fundamental to Swansea College of Art’s mission. Within the ALEX Building this is seen clearly in the work of the innovative 3D Computer Animation and Creative Computer Games programmes.

The ALEX building is also home to the University’s Industrial Design department, which include the only Automotive and Transport Design programmes in Wales plus the award winning Product Design programmes.

Cerebra Annual Quiz Night

Cerebra team

On 9th June we held our second annual quiz evening at Carmarthen Town AFC’s clubhouse.

The evening was a huge success with teams competing for the coveted title of ‘Cerebra Quiz Champions’ under the watchful eye of estate agent and temporary quiz master Gerald Vaughan.

All of the quizzing subject favourites were covered from sport to entertainment. Some of the rounds had a special twist with one round asking teams to ‘guess the branded product’ and another asking them to guess the Musical from a short piece of music.

It was a closely fought contest with ‘The Red Kite Hot Trivia Peppers’ eventually claiming victory ahead of ‘Let’s Get Quizzical Carmarthen Round Table’.

A delicious supper of pie and mash was followed by a raffle draw and an auction with a huge array of prizes kindly donated by local businesses.

The winning team from Red Kite Solicitors

The event raised a fantastic £1,800 for Cerebra and the winning team, “The Red Kite Red Hot Trivia Peppers” even donated their £300 winnings back to the charity.

We are really grateful to the local businesses who donated raffle and auction prizes and those who entered teams into the contest. We are also grateful to Gerald Vaughan for giving his time as quiz master and auctioneer for the evening.

Feeling inspired to hold your own quiz? Get in touch with Jess Thomas on 01267 244222 or jessicat@cerebra.org.uk for tips and fundraising materials. She might even let you have a peek at our questions.

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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Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day. We are particularly grateful to have received sponsorship from:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

Why we’re Sleep Walking for Cerebra

Tracy Elliott

Tracy Elliott

Tracy Elliott, Head of Research at Cerebra, explains why she and her family are taking part in our Sleep Walk on 23rd July.

“Sleep, or lack of, is an issue most new parents face. We were no exception. Only our daughter, unknown to us at the time, had an Autistic Spectrum Disorder. We spent many hours walking up and down our hallway in the middle of the night trying to get our beautiful new daughter to sleep – nothing worked. We sought help, standard sleep management techniques did not work. Sleep deprivation continued.

Now as Head of Research for Cerebra I’m pleased to support research into sleep disorders. We know sleep disorders are common, different in nature and problematic for children and families living with Autism, intellectual disability, Angleman or Smith-Magenis syndromes. Cerebra funded research will help everyone understand why these problems occur and what can be done to help.

Mair Elliott

Mair Elliott

Nineteen years on we are walking up Pen Y Fan at night to replicate our early night walking experience and to raise awareness of, and money for, this important sleep research”.

Tracy, Geoff and Mair Elliott

You can help Tracy Elliott raise money for this great cause by donating directly to her fundraising page.

Research into Sleep Disorders is being carried out by the Cerebra Centre for Neurodevelopmental Disorders at Birmingham University.

Calling all Carmarthen Quizzers – Round 2!

Cerebra are preparing to hold our second quiz evening following the huge success of last year’s event.

We are once again asking the people of Carmarthenshire “are you Carmarthen’s smartest?” with rounds of questions covering favourites such as music, sport and current affairs.

The quiz will take place at Carmarthen Town AFC’s Clubhouse, Richmond Park on Thursday 9th June 2016. Teams will be pitted against each other to win the title of “Carmarthen’s Smartest”, as well as a cash prize of £300 – oh, and the chance to win our coveted trophy!

There will be eight rounds in total covering a range of subjects, as well as a few other fun rounds, so there will be something to suit everyone no matter what your specialist subject is!

We invite teams with up to a maximum of five members to take part but if there are more than five of you, don’t worry. We have plenty of spaces so you can just play against each other!

As well as the main event, there will also be a raffle and auction with some fabulous prizes on offer.

The entry fee is just £50 per team and this includes a lovely pie and mash supper from Hughes the Butcher, St Clears. There is also a fully licensed bar on site, should you need some encouragement!

All proceeds from the evening will come directly to Cerebra so get involved to help raise money to support children with brain conditions.

Booking is essential so to get your team involved please get in touch on 01267 244222, email jessicat@cerebra.org.uk or fill out the form on our “What’s On” page.

Strictly Come… Tea Dancing!

Due to unforeseen circumstances, we have been forced to postpone this event. Thank you for your interest.

On Friday 18th March Cerebra will be holding its first ever Tea Dance at St Mary’s Church Hall in Carmarthen.

We have enlisted the help of Pam Hopkins from Ultimate Ballroom who will be offering one-to-one tuition in a variety of dancing styles including Ballroom and Latin.

If you have never danced before, don’t worry! Pam’s hands-on tuition means that it will be a fun event for anyone of any ability.

There will also be refreshments on hand for when you work up a sweat dancing!

The event will start at 2pm and go on until 4pm.

Tickets are £10 with all of the proceeds coming to Cerebra.

If you would like further information about this exciting event, please contact Jessica Thomas on 01267 244222 or jessicat@cerebra.org.uk or use the contact form below.