Cara smashes duathlon challenge

Cara Readle

Cara Readle

One of our Ambassadors, Cara Readle, recently completed a duathlon and raised over £500 for Cerebra!

This was a particular challenge for Cara as she was born with Cerebral Palsy, but she has never let anything stand in her way!

Cara’s duathlon saw her embarking on a 5km walk on a treadmill and a 5km cycle on a static bike. Initially the challenge was set to take place over the course of a day at Xcercise4less gym in Swansea but Cara did a fantastic job and managed to complete the entire challenge in just a couple of hours!

Cara said: “I set out to do something that I knew I would find very challenging but I wanted to challenge myself in order to raise money for Cerebra.”

To date, Cara has raised over £500 and you can still donate through her Just Giving Page.

If you feel inspired and would like one of our fab new fundraising packs just get in touch with us on info@cerebra.org.uk

Watch Cara reach the 4K mark on the treadmill:

Innovation Centre’s spinning pod a big hit with Curtis

Curtis and his spinning pod

Curtis and his spinning pod

Louise recently contacted our Innovation Centre after seeing a post on our Facebook page about the spinning pod chairs that the team had created. She knew one would be perfect for her son, 11 year old Curtis who has Charge Syndrome. She told us their story.

Curtis has Charge Syndrome which affects him in lots of different ways. It affects his development, meaning that he can’t walk and talk and he also has many sensory issues. He is partially sighted and has a cochlea implant because he is partially deaf. He is unable to tell where his body is in space and because of this, he has balance issues.

Longer term, Curtis has heart and lung problems and is on long term ventilation after needing a tracheotomy. He has night carers who have been a big help as Curtis isn’t a good sleeper, although he goes through patterns with his sleep and it has been helped with medication.

Curtis craves constant sensory input which means that he often gets frustrated and can lash out. His 4 year old brother Oscar is great with Curtis but it can be difficult for him, especially if Curtis is having a bad day.

Oscar enjoyed the box

Oscar enjoyed the box

For a while now, I have been looking for something to help Curtis to feel more grounded. We had a very old spinning chair that Curtis would spin on all day if he could because he doesn’t get dizzy but as he was getting older, the chair was getting less safe for him to use and I was worried it would break. Then I saw pictures of the spinning pod chair that the Cerebra Innovation Centre had created on Facebook and knew it would be perfect for Curtis!

I contacted the team and the day the chair arrived, Curtis was absolutely over the moon with it! Oscar even loved the box that it came in! The pod now makes up an important part of Curtis’ day. He can touch the floor and spin himself which gives him some independence and it also grounds him so the benefits have been huge.

The Innovation Centre have been great. A lot of things are designed for younger children and often there’s not a lot available for older children but they helped to fill in the gaps. There are so many challenges we face and it’s nice to know there’s someone there to help.

You can find out more information about the Cerebra Innovation Centre on our website. If you would like to find out how you can get a spinning pod like Curtis’s, contact the team at cic@cerebra.org.uk.

Engage to Change

Kyle Davies

We’re delighted to welcome Kyle Davies to our team following his Engage to Change placement with us.

We were very keen to become involved in the Engage to Change scheme which is currently running across the whole of Wales to support young people aged 16-25 with a learning disability and/or autism into paid work placements lasting 6-12 months.

Kyle Davies from Burry Port began a six month placement with us in February this year. Elaine Collins, our PR & Marketing Manager and Kyle’s placement supervisor, explained “the process of setting up a placement was really straightforward – the staff at Engage to Change were great to work with and really took great care to match up the role we were offering with the right person. The ongoing support they have offered Kyle and myself has been fantastic”.

During his placement Kyle has worked with our marketing and fundraising teams, helping to produce newsletters and articles for the website, carrying out events research and working on the summer raffle scheme. Kyle settled in so well and made such a contribution that we were delighted to be able to offer him a paid role at the end of his placement.

Owen Williams, Kyle’s job coach from Engage to Change said “from day one Cerebra have been extremely positive and supportive towards Engage to Change and were keen to offer an employment opportunity to one of our clients. After a careful job matching process Kyle was placed with Cerebra as an Admin Assistant and has received an excellent level of mentoring, support and guidance from Elaine and other staff at Cerebra, which has enabled him to significantly increase his self-confidence and communication skills and become a valued member of the team. After completing a successful 6 month paid work placement Kyle has now been offered paid employment at Cerebra which he was very happy about! I would just like to thank Cerebra for the ongoing support and commitment to both Kyle and the Engage to Change Project as a whole”

Elaine said “Kyle hasn’t looked back since he joined us and we’ve seen his confidence increase every week. He’s very much part of the team and we’re delighted that he’s staying on with us”.

It’s been a great experience for Kyle too. He told us:

“I’ve really enjoyed working at Cerebra over the 6 months of my placement. It’s been an amazing experience working on projects for the different departments. Everyone from Cerebra and my job coaches Owen and Steve from Engage to Change have been very nice and always able to help if I had any questions. As my placement came to an end I was ecstatic to be given the news that I would be kept on as a part time member of staff. Thank you for the opportunity and I am eager to make a positive contribution to the charity”.

The experience has been such a positive one for us that we have offered a second placement under the scheme.

The Engage to Change project aims to help over 1000 young people achieve their full potential by supporting them to gain experience in the workplace and develop transferable skills through a person-centred approach. To do this they are working with 800 employers over five years, offering one-to-one job coaching and specialist employment support to both young person and employer. This project is made possible through funding from the Big Lottery Fund in partnership with Welsh Government.

We have a new Chair of Trustees

Sean Taggart

We are pleased to announce that Sean Taggart will be joining the Board of Trustees on the 1st of September as its new Chair.

After twelve years as a Trustee of Cerebra and almost six years as Chair of the Board, Professor David Rose is stepping down from the Board from 31st August 2018. Everyone at Cerebra would like to thank David for everything that he has done to promote and support the charity during his tenure. We wish him every success and happiness for the future.

Originally from England, Sean now lives in South Wales. He has many years’ experience of running his own tourism business which he grew to annual sales of £32m before selling it to his management team last year. He now runs his own business helping a wide range of owner managers to accelerate their growth plans by building stronger and more sustainable businesses.

Sean also has over 20 years’ experience in a variety of voluntary and non-executive roles within the private, public and charity sectors. For the last ten years he has chaired the Board of Trustees at Crossroads Care Kent, a charity supporting carers in Kent. It is now the largest voluntary organisation based in the county, employing over 200 staff and generating income of £4m.

He is also currently Deputy Chair of Investors in People, reflecting his long-held and incredibly strong belief that for organisations to truly thrive, they need to continually focus on investing in the development and growth of their people.

Sean commented: “I am really looking forward to getting involved with Cerebra, working with the trustees and supporting the Management Team on the next stage of the charity’s journey, which includes helping to ensure that everyone is doing the very best job possible for all of those children and families that Cerebra supports.”

David Rose - Chair of Trustees

David Rose

David Rose commented: “I consider it a great privilege to have been a Trustee of Cerebra and, in recent years, it’s Chair. It is an enormously valuable and important charity. The way that it harnesses the inputs of families, senior researchers in universities, other charities and the expertise of its own staff in the interests enhancing the wellbeing of young people with brain conditions is truly remarkable. My warmest thanks to all who contribute so much to this process and I wish you all the very best for the future”.

For more information contact Chris Jones, Chief Executive on Chrisj@cerebra.org.uk

Jonas enjoys sensory toys from our library

Jonas with fibre optics

Jonas with fibre optics

Jonas’ parents recently contacted our postal lending library to borrow some sensory lights. Mum Jolanta and dad Andrej told us their story.

”Jonas is a 2 year old boy who has CDKL5 disorder. CDKL5 is a rare x- linked genetic disorder that results in early onset, difficult to control seizures, low muscle tone and severe neurodevelopmental impairment.

Most children with CDKL5 do not walk, almost all do not talk and they have a range of other symptoms. Sadly Jonas has a cortical visual impairment (CVI) and can’t hold his head up yet. Unfortunately there is no treatment  for his condition.

As a parents we are looking for all available options how we can help our son to enjoy life as much as possible. At the same time we want to improve his vision and that is a reason that we decided to try to borrow the fibre optics from Cerebra library.

And it was amazing! Jonas enjoyed fibre optics so much and it helped his therapy to stimulate his vision”.

You can find out more information about our postal lending library on our website or by emailing janetp@cerebra.org.uk.

 

Summer reading

Summer reading

Are you looking for ways to entertain the children this summer? Did you know that you can borrow children’s books from our postal lending library? Check out some of the fab books we have available to borrow for free.

Age 5 – 8

The Five of Us by Quentin Blake

Angie, Ollie, Simon, Mario and Eric are five fantastic friends, each of whom has an unusual ability. Disaster strikes on a day out to the countryside but, working together and combining their individual powers the Fantastic Five save the day.

Avery by Marta Altes

Avery is like other birds most of the time, but sometimes, feels a bit different. But Avery is not alone.

Eagle Eyes by Jeanne Gehret

Like a river overflowing its banks, Ben wreaks havoc until he learns to recognise and control his ADHD. By the end of the book, Ben’s family wonders how they could have gotten along without his special way of seeing the world.

Age 8 -12

Of Mice and Aliens by Kathy Hoopman

When Ben and Andy discover an alien has crash landed in the backyard they’re faced with a problem. They want to help Zeke repair his ship, but why does he ask for such strange things? Can they trust him? This is a book of mystery and fun with Ben learning to cope with his newly diagnosed Asperger Syndrome and Zeke trying to cope with life on Earth, things are not always what they seem.

Monkey by Veronica Bennett

Harry Pritchard may be bullied at school and bored at home, but he’s not exactly thrilled when his mother volunteers him to visit a severely disabled patient of hers. She says it’ll do Harry good. But how can it end the bullying? Of get him a part in the drama club play? Or win the attentions of Louise Harding, the girl of his dreams? Well, Harry is in for some big surprises!

Stuck in Neutral by Terry Trueman

Shawn has severe cerebral palsy. No control over his muscles, no means of communication, no hope of improvement. Yet humour, joy and love sit alongside frustration in Shawn’s mind. His internal life is full of unseen pleasures, but his father perceives only the devastation of an uninhabited body. And Shawn suspects that as his father’s sorrow builds, so does his desire to act…

Age 13 plus

Haze by Kathy Hoopman

Seb is a loner. Brilliant with numbers but hopeless with people, he prefers the company of computers and his only friend Guzzle. Thing change for the better when he makes friends with Kristie, Madeline and Jen, and a new computer teacher, Miss Adonia arrives. However, Seb is soon caught up in a web of computer fraud and lies and turns to Madeline’s mysterious cyber friend for help.

Rules by Cynthia Lord

Twelve year old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “no toys in the fish tank”. But the summer Catherine meets Kristi, the potential next-door friend she’s always wished for, her own behaviour turns everything upside down and forces her to ask “what is normal?”

Trueman Bradley – Aspie Detective by Alexi Maxim Russell

Trueman leaves his hometown of Heartville, Illinois and arrives in New York City where he is soon told that a guy with AS could not possibly succeed as a detective. However, it’s not long before Trueman’s crime-fighting skills are put to the test when he is robbed on this first day in New York and he sets about using his exceptional mathematical abilities to invent a crime-fighting equation.

e-books with BorrowBox

  • ‘I am Not Joey Pigza’ and ‘The Key That Swallowed Joey Pigza’ by Jack Gantos
  • ‘The Curious Incident of the Dog in the Night-time’ by Mark Haddon

e-audiobooks with BorrowBox

  • ‘Rent a Bridesmaid’ and ‘Clover Moon’ by Jacqueline Wilson
  • ‘Who Killed Darius Drake’ and ‘Freak the Mighty’ by Rodman Philbrick
  • ‘Peter Rabbit’ by Beatrix Potter

If you would like to become a Cerebra Library member or a Cerebra BorrowBox member to borrow books, e-books or e-audiobooks for your child to read or listen to, please contact Jan the librarian at janetp@cerebra.org.uk for more information.

Handy tips for summer holiday sleep

tips for sleeping during the summer holidays

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

We hope these tips have helped but if you need more personal support our team would be happy to help. Visit our sleep pages for more information.

Travel insurance covering children with disabilities

travel insurance covering children with disabilities

At this time of year, one of the questions coming in to our helpline is about travel insurance that will cover children with pre-existing conditions. Many people have travel cover potentially included with a service they already use, such as car insurance, a membership subscription or a bank account, but they have looked in the small print and found that pre-existing conditions are excluded.

Should you be in this position and wish to know where to find an insurer that will provide cover, the list below is a place to start. Some of these companies only cover for certain conditions.

Listing these companies does not imply that Cerebra recommend any of them, only that we know they are there. Please make sure you check that they are suitable for your needs.

Insurance companies

A holiday advice organisation that may know of other insurers is Tourism for All.

Other things worth thinking about before travelling

Government advice about travel with disabilities, which includes insurance, booking, taking medication abroad, law, access, finance, airports and so on.

For travel in the UK, the National Key Scheme for access to toilets for people with disabilities (not all toilets are kept locked, but for those that are), http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=National+Key+Scheme&level=2 and

For travel in Europe, a European Health Insurance Card (EHIC) is needed. These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.  Further details: http://www.moneysavingexpert.com/travel/free-ehic-card.


This article was first written in June 2015. Updated August 2018.

Cara draws winning summer raffle tickets

Cara with CEO Chris Jones and some of our fundraisers

Cara with CEO Chris Jones and some of our fundraisers

On 25th July actress Cara Readle, who is one of our fabulous ambassadors, drew the winning tickets for our summer raffle.

Cara is currently in training to complete a duathlon challenge for us so Cerebra staff got into the spirit of the occasion and dressed up in their best workout clothes!

We hold two raffle draws every year, a summer and a winter raffle. You can find out more information about our raffles including how to purchase tickets and past winners here.

Cara to take on duathlon challenge

Cara Readle

Cara Readle

Swansea born actress Cara Readle, famous for her role in ‘The Story of Tracy Beaker’, will be taking on a duathlon on 20th August to raise money for Cerebra.

The 27 year-old, who was born with Cerebral Palsy, has been an Ambassador for us for several years and has never let anything stand in her way. Back in 2014, she completed a 2 mile walk in Mumbles from Black Pill to Verdi’s – a huge achievement.

As well as having many acting credits to her name already, Cara also graduated from the University of Wales Trinity Saint David with first degree honours in Performing Arts.

Cara’s latest challenge will see her embarking on a 5km walk on a treadmill and a 5km cycle on a static bike, all taking part over the course of a day at Xcercise4less gym in Swansea.

Cara said: “I have set out to do something that I know I will find very challenging but I wanted to challenge myself in order to raise money for Cerebra. It may take me all day, the walking will be the hardest part for me but I will compete it. I have started training for this and I have lots of support!”

Cara took time out of her busy training schedule on Wednesday 25th July to draw the winners for Cerebra’s summer raffle. Cerebra staff got in to the spirit of the occasion by dressing in their best workout gear!

You can sponsor Cara through her Just Giving page.