Category Archives: Events

Accessing Public Services Toolkit Workshop – London

Following on from the success of our Toolkit Workshops across England and Wales, we are pleased to announce that we will be running a workshop at the London offices of one of our major supporters, Bolt Burdon Kemp.

When?

Monday 30th October 2017, 10am – 2pm.

Where?

Providence House, Providence Place, Islington, London, N1 0NT.

Event description

This free workshop aims to help parent/ carers to access services from public bodies such as the local authority or health board by using Cerebra’s Accessing Public Services Toolkit.

Parent/ carers can experience difficulties in accessing these services and this workshop looks at these problems and at how to develop effective strategies for resolving them.

The idea behind this is that it is not in the interest of the public bodies to have these commonly occurring problems and that most of these are capable of being resolved without great expense to those involved.

There is a presentation, case studies for groups to work on and also the opportunity to share experiences.

The workshops are timed to fit in with the school run and there is a 30 minute lunch break scheduled, with lunch and refreshments provided.

The workshop is run by Cerebra staff and parent/ carers who are familiar with the challenges that families face.

Spaces are limited so if you are interested in attending this workshop, please contact Beverley Hitchcock at beverleyh@cerebra.org.uk or on 01267 242557.

Josh Nurse Becomes an Ambassador

Josh receiving his Ambassador certificate

Josh receiving his Ambassador certificate

Joshua Nurse from Pontiets, Carmarthenshire is celebrating his 16th birthday by becoming an Ambassador for us and drawing the winning tickets in our Summer raffle draw.

15 year old Joshua Nurse from Pontiets is the same age as Cerebra – and we have known and worked with him and his family since he was a baby.  Josh was born with a rare condition called Agenesis of the Corpus Callosum. It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having learning disabilities and autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – until they found Cerebra.

Josh has also been a great help to the charity when we’ve needed him – he has drawn winning raffle tickets presented cheques to lottery winners and posed for photos for charity publicity. He’s attended prestigious events at 10 Downing Street and the House of Lords and was delighted when we nominated him for a Child of Courage Award at the Journal Awards ceremony a couple of years ago – and he won! Josh is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh celebrates his sixteenth birthday in August and to mark the occasion we have asked him to become an Ambassador for Cerebra, On 31st July Josh drew the Summer Raffle and was officially welcomed as an Ambassador – as well as enjoying an early birthday celebration with charity staff!

Elaine Collins, PR & Marketing Manager for Cerebra said: “It’s been such a pleasure to have known Josh and his family all of these years and to have watched him grow up – he’s touched the hearts of everyone who has met him. He’s done so much to help raise awareness of our work and we’re delighted to make him an official Ambassador for us”.

You can find out more about Cerebra and their Ambassadors here.

Join our team and be a Triathlon Superhero!

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends.

The event will take place in Dorney Lake, Windsor on 19th August and promises to be a fun filled day with the chance to meet and take part alongside Paralympian and celebrity team captains.

We’re thrilled to be a charity partner for the event and we’re looking for people to join us on Team Cerebra. There are lots of different ways to take part, the only requirement is that one person on your team (or you if you choose to fly solo!) must have a disability:

  • Team up – unite with disabled and non-disabled friends and family to share the fun
  • Grab a sidekick – tow a teamate in the water and push or pull them around the course
  • Fly solo – for those who want to take on all the triathlon stages by themselves.

There are also three different distances that you can choose from:

  • Sprint – 150m swim, 3k cycle, 1k run
  • Half – 400m swim, 10k cycle, 2.5k run
  • Full – 750m swim, 20k cycle, 5k run

Father and daughter team, Rob and Poppy, have already signed up and have been chosen to take part in a special celebrity race. They’ll be partnered with Olympian Chris Jones and will be competing against the likes of Hannah Cockcroft and comedian and talk show host Adam Hills.

You can find out lots more about the event on the Superhero Series website, but if you’d like a chat about the different options and how we can help you to take part please just get in touch with ceciliab@cerebra.org.uk.

We’ve got people on hand to help out with the running, cycling or swimming legs and may also be able to supply some equipment – including a specially designed boat.

We’d love you to join us and show off your superpower. So please get in touch – it’s going to be awesome!

 

 

Sleep Seminar Gives Advice on Aromatherapy, Mindfulness and Massage

We recently held a Sleep Seminar in Leeds at the Mencap Centre. The theme of the day was supporting sleep through mindfulness, aromatherapy and massage.

Alongside a presentation from our own Sleep Practitioners was Lois Skilleter, from Earthereal of Yorkshire therapies. Lois gave a great presentation on each topic and everyone eagerly took part in the practical demonstrations of either hand massage or head, neck and shoulders in the afternoon, with the support of Lisa and Amanda, Lois’ students. This provided a wonderful relaxing and enjoyable end to the day for parents and professionals, whilst a special mention must be made to our Sleep Practitioner,  Laura MacDonald  who selflessly put herself forward to be Lois’ demonstration model!

We also had Phil Truby from Yorkshire Sport Foundation talking about how they support children and adults who have disabilities to access sport and activities, as well as the positive impact that has not only on their fitness but on improving their social networks and emotional wellbeing.

We had so many positive comments about the day, here are just a few:

‘After 10 years of living with a child with a sleep disorder, I feel that despite thinking we had tried everything, we learned new techniques.’

‘I suffer from ticks and verbal shouting and was terrible on the journey to the seminar. I soon calmed down with the welcoming environment, lovely staff and relaxation exercises. Even my husband, who initially thought it was nonsense, benefitted from the mindfulness exercises.’

‘It has given me the confidence to go and try these things at home.’

‘Lots of ideas that a frazzled, sleep deprived mum would not consider.’

‘Having been shown how to massage, this will be very useful. I will definitely be doing this with my son.’

We were very grateful to have the event sponsored by Irwin Mitchell, who also very kindly provided the lunch, which was absolutely fantastic and much appreciated by everyone who came.

A huge thank you also to the staff at the venue who went out of their way to help us and everyone who contributed to make the day such a success. There are definitely a few children who will benefit from receiving their parent’s new found skills!

You can download handouts from the day below:

Aromatheraphy and Massage Handout Mindfulness Handout

Cerebra Sleep Conference – Tackling Sleep Disturbances in Children with a Learning Disability

On Wednesday 28th June 2017 we held a one day conference on sleep disturbances in children with brain conditions to share developments in sleep research and look at how this new information will affect parents, carers and professionals.

The conference was full of useful information and a great chance for people to meet and discuss ideas. You can find out more about the talks below and download some of the presentations.

Session 1: Understanding Sleep

An Introduction to Sleep

Dr Andy Bagshaw who is a Reader in Imaging Neuroscience at the University of Birmingham gave a fascinating talk on what sleep is and why it so important.

Download the presentation as a PDF

Sleep and breathing in children with neurodevelopmental disorders

Dr Cathy Hill is an Associate Professor in Child Health at the University of Southampton and Honorary Consultant in Sleep Medicine at Southampton Children’s Hospital where she has built up a multi-disciplinary children’s sleep disorder service. Cathy’s talk gave an overview of the effect breathing difficulties during sleep can have on brain function and development, including data from her research in children with severe motor disorders and Down syndrome.

Session 2: Family and Support

The bedtime story of sleep deprivation

Leeann Stevenson is the mother of three children, including Lily who is 10 and has Smith-Magenis Syndrome (SMS), a condition that commonly features disrupted sleep patterns. Leeann’s talk was about the impact having a child with sleep disturbances has on family life.

Download the presentation as a PDF

Cerebra’s Sleep Services

Claire Varey, one of Cerebra’s Sleep Practitioner gave a presentation on the work of our Sleep Service and how it can help families with children who have difficulty sleeping.

Download the presentation as a PDF

Session 3: Current Sleep Research

Sleep, challenging behaviour and pain in neurodevelopmental disorders

Dr Caroline Richards who is leading Cerebra funded research at the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham gave a talk on the links between pain, challenging behaviour and sleep in children with neurodevelopmental disorders.

Download the presentation as a PDF

Sleep and cognition in neurodevelopmental disorders

Dr Anna Joyce is a Research Associate in Psychology at Coventry University. Anna’s talk described various sleep problems experienced by children with neurodevelopmental disorders and how sleep affects children’s cognition, illustrated with some of Anna’s recent work.

Active research at the Cerebra Centre

Georgie Agar is a PhD student at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmgham. Georgie’s talk was all about the research being done at the Centre.

Download the presentation as a PDF


The conference also launched our new Sleep guide that the our Sleep Team, together with the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham, have developed to assist parents to manage their child’s sleep disturbance.

All of our information resources are covered by The Information Standard, a recognised quality mark which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written.

Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

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!”

The team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

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

12th September – Halton – venue to be confirmed
20th September – The Carers Centre, 24-26 George Street, Croydon, CR0 1PB
9th October – Carers Gloucestershire – venue to be confirmed
10th October – North Somerset – venue to be confirmed
30th October – Islington
7th November – Barnet
8th November – Bridgewater
10th November – Cardiff – venue to be confirmed
17th November – Swindon

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.

hyphen law

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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.