Author Archives: Elaine Collins

Surfing Success for Cerebra

Kai getting ready to surf

Our Innovation Centre have successfully tested two pioneering new surfing products for disabled children at Llangennith beach in west Wales. Over the summer our designers have developed two products: a tandem surf board with a supportive “bucket” seat that can be used by disabled children whilst being controlled by a trained surf instructor and a Surf Access Vehicle. Both products are for use by children with neurological conditions and have been developed with Surfability UK (surfing for disabled children) and Tonic Surf Therapy (based on the evidence of the effectiveness of surf/ocean therapy programmes in the UK and USA). The team tested the new products at Llangennith beach and they were helped by thirteen-year old surf enthusiast Kai Lewis, from Port Talbot, who has cerebral palsy following a stroke at the age of one.

Kai taking to the waves

Kai riding thewaves

Proud mum Leanne Lewis watched on, thrilled as her extreme-sports-loving son enjoyed the new technology. She said “with this now, he is like the king of the sea, he can sit back, relax, and ride the wave. The first wave he caught was the biggest he has ever caught, and my heart was in my mouth. It was amazing and it opens up so many options, not just for Kai, but for other children with disabilities. Hopefully it’s going to get more children out of their wheelchairs, and for a parent of a child in a wheelchair the more you can get them out, the better.” Speaking after the testing Dr Ross Head, CIC Product Design Manager, said: “The day went so well. We could not have hoped for better surf conditions, weather, and great team of people with the desire to make this work. It was an amazing feeling to see Kai surf past shouting with joy.”

The Surf Access Vehicle

The Surf Access Vehicle

He continued: “Recent news coverage has detailed professional level surfing and brought it to an international audience. The sport continues to grow at a very fast pace. Many disabled surf charities are in existence around the world but they are all trying to use regular surfing and other beach access equipment to enable disabled children and adults to surf. “Since its inception CIC has made a tremendous difference to the lives of many children with neurological conditions across the UK. The unique strategic vision for CIC means that we are able to respond to individual requests for help and can make small numbers of bespoke products that focus heavily on individual requirements and inclusion into society. Some of the products in the portfolio are now being commercialised in partnership with third-party manufacturers under licensing agreements.”

Kai using the Surf Access Vehicle

Kai using the Surf Access Vehicle

Read more here about how CIC may be able to help your family. We are grateful to the University of Wales Trinity St David, Surfability UK, Roger Cooper Surfboards, Surf Tonic Therapy and Walking on Water Surf School for working with us on this project.

All photographs used with kind permission of Mark Griffiths.

Ross and the team at the Cerebra Innovation Centre are still in the early stages of trying to make these products available to surf clubs across the country and you can help make that a reality! You can donate below, by calling our fundraising department on 01267 244221 or to donate by text, just text SURF15 and the amount you would like to give to 70070. Thank you for any support you are able to give.

I would NOT like to gift aid my donation

I would like to gift aid my donation

Like to run? Why not run for Cerebra

Cecilia Bufton

Cecilia Bufton

Hello. My name is Cecilia Bufton and I have just started in the brand new role of Events Co-ordinator at Cerebra.

Cerebra does some fantastic work supporting children and families who are living with neurological conditions, but we rely on the generosity and commitment of our supporters to fund everything that we do. Each year lots of people up and down the country put on their running shoes and challenge themselves to raise money for the charity – and every penny they raise is vital.

I’m looking for people to join in with everything from fun runs to half and full marathons and the gruelling, but great fun, challenges such as Tough Mudder to raise awareness and funds for Cerebra. I will be here to support you, give you guidance in fundraising, provide all the resources you need and even cheer you over the finish line!

To tell you a bit about me, I actually worked at Cerebra about seven years ago as a telephone fundraiser. I left to go to university, but never forgot what I experienced as a friendly charity doing some great work to help families in need. I can simply say that this role is perfect for me and finding a job that has the potential to give you a great purpose and happiness is rare to come by.

So whether you’re a keen runner already or if you have never run before but would like to start, why not have fun, get fit and support Cerebra at the same time. Please get in touch or pass this information on to friends or family and let’s make a difference and keep fit in 2016.

You can contact me on:
Email: [email protected]
Tel: 01267 242 586
Mobile: 07580976497

I look forward to hearing from you.

Diagnosis delay and disabled children

At Cerebra we have identified that a delay in getting a diagnosis of your child’s condition in the UK can be a problem and that these delays can impact on the well-being of the child and/or his or her family. We’d like to find out more about the experiences of families in gaining a diagnosis for their child or children and we would be grateful if you could help us by completing a short survey. The results of this survey will be used to inform our work and enable us to better support families in the future.

Who can participate?

We are looking for parents and carers of children with a neurological condition who have, or who are waiting for, a diagnosis of their child’s condition. This survey relates to diagnosis and delay in the UK only. Neurological conditions include for example: developmental disabilities; learning disabilities; genetic syndromes; Autism Spectrum Disorder; Cerebral Palsy; ADHD; and seizure disorders (this is not an exhaustive list). If you have one or more children with such disabilities we’d like to hear about your experiences.

If you require a paper copy of the survey, please email Beverley Hitchcock at [email protected]. (please specify if you require larger text).

How long will the survey take me to complete?

We estimate the survey will take around 2-5 minutes to complete.

Is the survey easy to complete?

Yes, all the questions are multiple choice or just require very short answers, you do not have to fill in the sections that ask for more information but if you have something to share we’d like to hear about it.

Will my information be confidential?

All data collected will remain anonymous and will be kept in a database that is only accessible to those working on the survey.

What are the possible benefits of taking part?

Your contribution to this research is invaluable. While you may not directly benefit by completing this survey we hope that the information you give us will help inform Cerebra’s work in this area and potentially help other parents and young people in future.

What do I do if I experience any problems with the survey or want to complain?

Please email Beverley Hitchcock at [email protected].

Please click here to complete the survey.

Could you be an Ambassador for Cerebra?

Cerebra Ambassadors group photo

Some of our Ambassadors at the Cerebra Children’s Awards 2014.

Cerebra has a team of ambassadors, made up of parents, carers and professionals, who are passionate supporters of our work.

Our ambassadors come from all sorts of backgrounds and walks in life – what they share is a passion for the work that Cerebra does and a desire to let other people know about it. They help to raise awareness of the charity in their local area giving as much or as little time as they can spare. We really couldn’t do it without them.

Family relaxing togther

The Hoyle family

David and Mary-Jane Hoyle are just two of our enthusiastic Ambassadors . They support Cerebra because when they were told that their beautiful 18 month old daughter Annie-May had massive brain damage, cause still unknown, they felt lost and alone with nowhere to turn: “Cerebra have been with us on our journey and we can’t praise them enough”.  In supporting Cerebra the Hoyles have attended and given talks about the charity, raised money through sponsored events and appeared in a promotional video. You can meet the rest of the team here.

If you think you could be an Ambassador, or know someone who would, please get in touch with Elaine Collins on 01267 242583 or [email protected] We’d love to hear from you.

If you’d like to find out more about the Ambassador role you can download the role profile here.

Cerebra Ambassador Role Profile

£10,000 donation in honour of Frankie

Lisa and her son Frankie

Lisa and her son Frankie

Cerebra has just received an unexpected donation for £10,000 from The Wilmington Trust.  And it’s all thanks to campaigning mum Lisa Benson and her three year old son, Frankie.

Lisa told us the story:  “I’ve been fundraising for my son to have ABA Therapy (Applied Behavioural Analysis) for severe Autism since he was 3 years old.

I found it very frustrating trying to get my young son diagnosed at the age of 2, when it was very clear to me he had some severe developmental issues. Once we had finally seen a specialist and had an official diagnosis I started to extensively research my son’s condition to find the best way to reach out to him and understand his world but also improve his life and help him to learn.

Even the simplest tasks like clapping hands and responding to his name were completely beyond his capabilities. I read about ABA being the only (scientifically proven) therapy to have an enormous impact on Autistic children and knew that I had to find a way to cover the costs of this therapy and help my baby.

My son’s father walked out on us when Frankie was around 6 months old and has never supported him financially. As a single parent and full time carer I couldn’t return to work so I had to find ways to raise the funds to pay for ABA and that’s when I started “Frankie’s Fight”, a crowd funding page that I promoted on Facebook. I have to date raised over £14,000 for Frankie to receive private therapy, which has had such a positive impact on him, literally life changing.

Lisa and Frankie

Lisa and Frankie

I organise sponsored events, race nights, raffles, boot sales and beer festivals in order to get funds but I also contact people I went to University with and other friends and relatives to see if their workplaces can offer us sponsorship or if they can donate prizes…some offices have held bake sales and mufti days for us.

I contacted a friend at Wilmington Trust and he put forward Frankie’s fund for a donation. Because we are a good cause and not a registered charity they were unable to donate any money but they were in the process of choosing some charities to donate to and ask me to supply the names of five charities that help disabled children, like Frankie. They said they would give them £10,000 each in his honour. I received a text two months later from my friend saying my chosen charities had been sent cheques!

I’m delighted that I nominated you. I also nominated Chestnut Tree House, PACSO, Chichester Down Syndrome Support Group and Caudwell Children and all got £10,000. Wonderful deserving charities that are very close to my heart and have all at some point helped a child I know. I was looking for help for my son and although I didn’t achieve my goal, I did manage to get something good out of my efforts and that pleases me”.

We are very grateful to the Wilmington Trust for their generous donation and to Lisa for nominating us.  We wish her and Frankie all the very best.

Teenage sleep problem solved

Sleeping boyLack of sleep can be a problem for many families, particularly those who have children with a neurological condition. Although sleep problems tend to be associated with younger children, older children and teenagers often need help too.

Cerebra’s Sleep Service provides advice and support to families trying to get a good night’s sleep. Sarah Coldrey, our Sleep Practitioner in the South West recently met with a family whose teenage son’s sleep routine was disrupting his education.

The Hunters have 3 children and sought our help with the sleep issues their eldest son was having – he is 15 years old and has ADHD.  The teenager wasn’t falling asleep until 5am most days and was very tired and missing a lot of school as a result. With important exams ahead this was becoming a real issue.

After meeting with the family and thoroughly assessing their individual circumstances Sarah recommended a technique called ‘Chronotherapy’. This involves altering bedtimes each night, but instead of moving the bedtime backwards gradually as you would with young children (this would take a long time to do and in older children isn’t as successful), you move it forwards, by a few hours each day.

Here is an example of how the times can be moved:

  • 1st night: sleep at 4 a.m., wake at 12 midday
  • 2nd night: sleep at 7 a.m., wake at 3 p.m.
  • 3rd night: sleep at 10 a.m., wake at 6 p.m.
  • 4th night: sleep at 1 p.m., wake at 9 p.m.
  • 5th night: sleep at 4 p.m., wake at 12 p.m.
  • 6th night: sleep at 7 p.m., wake at 3 a.m.
  • 7th night: sleep at 10 p.m., wake at 6 a.m.

This technique can be difficult to introduce as it needs careful management – a parent or carer needs to monitor the child and keep consistently to the timings identified above.

Despite having other children and health issues the family were determined to give their son the best possible chance with his exams and were keen to give the plan a go.

Sarah followed up with the family a couple of weeks later and was delighted to hear that the technique had been successful. The teenager had been consistently sleeping from 10pm – 6am every night and as a result had not missed school for a whole week, a dramatic improvement. Ironically the only issue the family were having was that their son now wanted to go to sleep before 10pm!

For individual advice on your family’s sleep problems please get in touch with our sleep service.

Acquired Brain Injury – the effect on parents

Stop watch“We knew our lives were changes forever from that point”

Acquired brain injury (ABI) in a young person can present a significant challenge to a family. Research has shown that the well-being of families is essential for the young person’s neuro-rehabilitation.

Clinicians are concerned with creating an optimum environment for a child’s neuro-rehabilitation to take place within, but they are also aware of the vital role that parents play in the rehabilitation itself. Despite the increased needs of the young person, it is of central importance that parents are able to cope with the demands placed on them.

Recent research conducted by the University of Exeter has explored the psychological adjustment process of parents of young people with ABI. Ten parents whose children had experienced ABI were interviewed, and five main themes emerged from the interviews:

Lives Changed Forever

Parents discussed the ABI as representing a significant change in their lives. They described their experiences of loss throughout the journey of their child’s brain injury; for the child that they knew, for their child’s potential, and for their child’s missed experiences. They discussed their child’s dependence on them as something that would not change with time, altering the future they had imagined. Many of the parents discussed the ways in which the ABI had impacted both on individual family members but also on the family as a whole, particularly on siblings.

Sense of Self

Many of the parents discussed the challenges that the ABI raised for their sense of self. For some of the parents, the ABI had a substantial impact on their capacity to engage outside of meeting the needs of their child. This often meant parents taking lengthy periods of time off work, amending their working hours, or giving up their jobs completely. Parents found it easy to prioritise their child’s health initially, however as time passed they described feelings of loss, frustration, and disappointment.

Interaction with Services

Parents expressed the importance of being listened to by health care professionals. Whilst some of the parents described positive experiences of being involved in discussions, and having empathy shown to them, many encountered very different experiences. Some talked about positive relationships with schools however recognised the need for schools to receive specialist information regarding ABI.

Psychological Experiences

The early days following the ABI diagnosis were utterly devastating for the parents, who in many of the cases were faced with the possibility that their child may not survive. The parents described how little they understood about what was happening to their child, and subsequent feelings of anxiety and anger. Several parents described feelings of loss, heartbreak and “brokenness”. Coupled with their experiences of depression, they described a sense of loneliness and isolation from others.

Coping and Adjustment

Parents described several factors that had helped them to adjust. They talked about blocking out feelings and “getting on with it”, as well as drawing on their own personal characteristics and resiliencies. Some of the parents described the value of being able to rationalise, be logical, or to problem solve. Many talked about their experiences of finding a sense of belonging as a result of their interactions with people who understood and were able to empathise with what they were going through.

Some reflected on the experience of the ABI as giving them a changed perspective for the future. Parents discussed how their experiences had enabled them to re-evaluate their priorities, made them a “better person”, and helped them to embrace uncertainty. For some, they felt as though they had been given a second chance, and they embraced a renewed sense of how precious life was.

What does this mean for parents?

This research indicates that paediatric ABI has a significant psychological and emotional impact on parents. Access to psychology services during the initial aftermath of the ABI, and following discharge from hospital, is essential to enable parents and families to manage difficult emotional and psychological experiences. The study also suggests that the provision of support groups, and the facilitation of informal events, where parents can meet with those who are in a similar stage following the ABI, may aid adjustment and coping.

How can Cerebra help parents of young people with ABI?

Cerebra offers a wealth of practical information, advice, and support for parents. For more information on how Cerebra can support you as a parent of a young person with ABI,  Or call our helpline on 0800 328 1159.

For more information on the research study please contact:

Sian Hocking, Trainee Clinical Psychologist, [email protected]

 

Summer Raffle 2015 – winning tickets drawn

Ryan draws the winning tickets

Ryan draws the winning tickets

On 31st July we drew the lucky winning tickets in our 2015 Summer Raffle draw.

The draw was made by a very special guest – four year old Ryan Hooper, who has Down’s Syndrome. Ryan and his family (mum and dad Vanessa and Simon Hooper and brothers Aiden, Dylan and Taran) recently enjoyed a well earned break at the charity’s holiday home in Pembrokeshire.

Many families with children who have special needs find it incredibly difficult to find a place to go on holiday that caters for their needs. Cerebra’s holiday home, Vallecchia, gives families an opportunity to enjoy a break without some of the difficulties they might experience on a standard holiday. There is a ramped entrance to allow wheelchair access and a large bedroom with en-suite facilities on the ground floor. It also has a multi-sensory room and a soft play area with tactile sensory toys. There is a large garden and a games room in the detached double garage, with table tennis, table football and a pool table.

Ryan’s mum Vanessa said “The holiday was amazing. It was a chance for all of us to spend time together as a family and to get away from the hassle of everyday life. There was plenty of space for all of us and it provided everything we needed. That time together was priceless”.

The Hooper family with Sir E Bear

The Hooper family with Sir E Bear

Ryan loved helping us out with the draw – and thoroughly enjoyed meeting Cerebra mascot Sir E Bear! Our thanks to the family for helping us out.

The raffle draw is an easy way to support the charity, with the chance of winning a great prize. Tickets for Cerebra’s Christmas Raffle will be on sale soon. To get your tickets please contact us on 01267 244221 or email [email protected]

 

 

Cerebra Week 2015

Cara Readle with the Cerebra Fundraising Team

Cerebra Fundraising Team

Cerebra will be holding its annual awareness week in Carmarthen town centre from 27th July to 1st August.

This year a team from the charity will be in Merlin’s Walk from 10am to 4pm each day and there’ll be lots of fun activities, games and competitions to keep the children, and the whole family, entertained. There will also be the chance to meet Sir E Bear, the charity’s giant teddy bear mascot!

Anyone who stops at the Cerebra stand and has a go at one of the games will have the chance to be entered into a free prize draw to win family tickets to local attractions such as Folly Farm, the Gwili Railway, Dinosaur Park and Manor House Wildlife Park.

Allyson Silverthorne, Community Fundraiser at Cerebra, said “Our Cerebra week in Carmarthen is one of the highlights of our year – it’s always a lot of fun and it’s so lovely to have the chance to chat to people about the charity’s work. If you’re in the area please stop and say hello”.

The charity is very grateful to the management and shops at Merlin’s Walk and to the local tourist attractions for their support.

Alissa completes her 10k challenge

Proudly showing her off her medal

Proudly showing her off her medal

We are delighted to let you know that on 12th July Alissa Elsaesser successfully ran the British London 10K in aid of Cerebra.

Alissa was an absolute star on the day and loved the cheers and support from the crowd. She even achieved her ambition of crossing the finishing line ahead of her dad, Alex.

Alissa running in the London 10k

Alissa in action

Alissa was born with Down’s Syndrome but that has never held her back and she is always eager to help those in need. This is one of the reasons that she has decided to take on this challenge; to help children with neurological conditions across the country.

Her fundraising total is steadily climbing and she has now managed to raise well over £3,000! If you would like to donate you can do so by calling 01267 244221 to make a donation over the phone, or through her Just Giving page.

Alissa would like to thank everyone for their support and donations and for their kind messages of encouragement.