Author Archives: Sarah Jones

Designing a better future for children with brain conditions with help from South Wales Freemasons

L - R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)
L – R: Marc Lewis (Assistant Provincial Grand Master), Robert Payne (Charity Officer), Terry Osborn (Head of Income Generation at Cerebra) and Ross Head (Innovation Centre Designer and Developer)

Our Innovation Centre and the work they do to help children take part in and enjoy life alongside their friends has been given a boost, thanks to a generous donation of £38,749 by South Wales Freemasons.

One of the many ways we support children with brain conditions and their families is through our (CIC). At the CIC, a small team of innovators design and build bespoke products to help children overcome the challenges they inevitably face when taking part in activities that non-disabled children may take for granted.

The generous grant will contribute significantly to the salary costs for the Centre’s talented design team for one year, ensuring that the Centre can continue to make a difference to the lives of children across south Wales, and beyond.

Representatives from the South Wales Province visited the Cerebra Innovation Centre on Monday 28th January 2019 to learn more about the Centre’s innovative work and some of the children who will directly benefit from their support.

One of the children they met was two year old Amelie from Swansea who has quadriplegic cerebral palsy. Before Christmas the team made a Bouncer for Amelie which has made a huge difference to her daily life.  The Bouncer allows Amelie to move independently, something that she would otherwise be unable to do. She loves the swinging sensation and can enjoy this while the seating gives her all the postural support she needs. Mum Lucy explained that Amelie loves her Bouncer as it allows her to move on her own and have fun. The Bouncer also strengthens Amelie’s legs and core muscles so it’s great exercise for her too.

Amelie
Amelie

Ten year old Bailey is also from Swansea and has been enjoying the Spinning Pod that the Innovation Centre designed and made for him. Bailey has a life threatening brain condition, is blind and autistic. Bailey has a great love of music and really enjoys bouncing and spinning – so the new chair is perfect for him. In the chair Bailey feels safe and cocooned and can spin it himself which is great for his independence and also for him to self-soothe when he feels frustrated. His mum Charlie explained that that the chair is his new safe place and he spends a lot of time in it playing the piano and with his toys. She added that it’s ‘Bailey proof’ – very sturdy and unbreakable!

Staff and pupils from Ysgol Crug Las, a special needs school in Swansea taking pupils from ages 3 – 19, also attended the event.  Head teacher Clare Hobson explained that the school has a close and long standing relationship with the Innovation Centre.

Terry Osborn, Cerebra’s Head of Income Generation, said “We’re very grateful to South Wales Freemasons for their generous grant, which will allow us to help hundreds of young people with cerebral palsy, autism and similar conditions to enjoy everyday life in the same way as everyone else.”

Rob Payne from South Wales Freemasons, said:

“I’m delighted we’re able to support Cerebra, who do outstanding work helping some of the most vulnerable people in our community to have access to the same opportunities and lifestyle as the rest of us.”

You can find out more about the Cerebra Innovation Centre and view their whole product portfolio here.

CIC is a partnership project with the University of Wales Trinity Saint David and is based within its Swansea College of Art.

Samuel discovers freedom with his Oxy-gem

Samuel and his oxy-gem
Samuel and his oxy-gem

Samuel’s mum Joceline recently contacted our Innovation Centre. As a member of a parent group on Facebook, she had seen how another child had benefited from our Oxy-gem. She knew that it would be perfect to help Samuel.

Three year-old Samuel has Down’s Syndrome and small airways disease. This means that he is on oxygen 24/7 and whilst he can walk, he could not carry the weight of his oxygen cylinder so his mobility was extremely restricted.

Joceline knew that the Oxy-gem could greatly improve Samuel’s independence and the Innovation Centre team were happy to help!

We sent Samuel one of our Oxy-gems in time for him to take it for a test drive around Blenheim Palace!

Joceline told us: ‘It was the first time he’d been able to participate on foot, rather than in his buggy.  You can see the excitement on his face.  The trolley went for a good 20 mins, on the path, on the grass, through the leaves….it was a life liberating day for him. He also uses it at school twice a week and it’s brilliant.  

Thank you so much for your help with this. I cannot begin to tell you how valuable the Oxygem is to us.  It has freed our son from the shackles of a buggy and helped him develop his independence and core strength and physical stamina.’

If you would like to find out how the Cerebra Innovation can help you, whether that’s with the Oxy-gem or if you have another challenge for the team, please get in touch! Email [email protected].

Cerebra to benefit from Co-op Community Fund

Vanessa with Dylan, Ryan and Taran
Vanessa with Dylan, Ryan and Taran

This year we have been chosen to benefit from the Co-op Local Community Fund.

At a time when funds for charitable organisations are becoming more difficult to access, we are incredibly grateful for this opportunity to make real difference.

We are raising funds so that we can continue our work to help families who have a child with a brain condition to discover a better life together. Families who have a child with a brain condition such as autism, cerebral palsy or Down’s Syndrome face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

Support from the Co-op Community Fund will help us to carry on supporting families like the Hoopers from Kidwelly. For seven-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered Cerebra.

Ryan has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family. When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

Vanessa says “Cerebra’s sleep service was invaluable to us. Whenever I called they’d answer my questions and reassure me I could cope. The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life”.

To help raise the vital funds, we’ll be relying on Co-op shoppers. Every time they buy Co-op own brand products they get a 5% reward for themselves, and a further 1% goes to local causes like ours. Co-op members can decide which local group they would like to back by going on-line at www.coop.co.uk/membership. We really hope that people will visit the website and choose to support us.

If you’re not a member and would like to support us, you can join at your local store or online at www.coop.co.uk.

When a community comes together we’re able to achieve great things, so we hope you can help promote our project.

Watch Vanessa explain what it’s like to have a child with a brain condition who doesn’t sleep well:

Joshua’s Transition Part 1

Emma tells us about the period of transition that her son, 17 year-old Joshua is about to face and the services that are available to help the transition. 

Joshua

I have always feared Joshua becoming older as it felt like a step into the unknown. Every birthday sounded so much older than the year just gone, the jump from 9 to 10 years old for instance seemed enormous, but of course it wasn’t at all, it is just a number. Now the jump from 17 to 18 , where we are approaching now, that is a significant change. In the eyes of the law, Joshua will become an adult next March, when he turns 18. I cannot keep my head buried in the sand about this one, this change is approaching rapidly and so I need to face it head on.

“I don’t need to think about that yet surely!”

Even as young as 15/16, health and education professionals referred to ‘Transition’ and I tried hard to ignore them and joke that I did not know what would happen next week, never mind that far ahead. But the references to transition did not go away, they gathered pace and they cropped up when we saw his neurologist who would be handing him onto an adult neurologist, our children’s epilepsy nurse who has taken care of his seizures since he was 4 years old would be passing him on and in his Education Health Care Plan meetings, when they would ask what we wanted Joshua to do when he left school at 19? I wanted to shout out loud “Stop it, he’s only 16… I don’t need to think about that yet surely!!” We had finally got to a comfortable place – he was in the best school for him, we had found respite provision that suited us all and we had established doctors who knew and understood him – and now, because of an anniversary, everyone wanted to throw all that we had carefully built up into a big bag and shake it up. I resisted it with all my might.

Opportunity

Then something changed this May and I began to relax and embrace the change, to see it as an opportunity rather than a threat. This change was due largely to one person: a social worker who was allocated to us from ‘Futures Plus’, who would represent Joshua once he was an adult. She paid us several visits, getting to know both us as his parents and Joshua in his home, school and respite session. She always delivered what she promised to do and most importantly, she listened, giving us the time to explain how we felt or how things are, she even saw my husband and I separately, which  nobody has done before, to explore our very different perspectives.

Respite for young people

In my mind I had envisaged adult daycare and respite services as being grim places, where my 18 year old son might be mixing with 80+ year old dementia sufferers, with the staff trying to juggle their very different needs. Our social worker immediately explained that there were facilities specifically for young people  and so I relaxed and decided that Joshua might actually enjoy the next step of his life, rather than it being a necessary evil. She visited all of the local adult respite places and even rated them from her own perspective, but encouraged us to visit each one to make up our own minds. I am confident that she too is determined to find somewhere suitable for Joshua’s needs. We have prioritised Respite as his current facility cannot have him beyond 18, whereas he can stay at school , in 6th form, until he is 19 so we have an extra year to find daycare solutions. So far we have looked at 2 of the 4 in our local authority area and I plan to get round the others this month. Joshua had to go out of area for his current short breaks and we have been reassured that if there is nothing suitable locally, we can argue that Joshua’s needs can only be met by a provision out of area. So far I have to say that I have found nothing that comes close to his current provision. I will not compromise, he will not be going somewhere mediocre just because it is local. I now know what I am looking for, as we have experienced the best, and I will keep searching until I find it.

Change

I have never been good at change, it always seems to be forced upon us just when things are settled. I can recall begging Joshua’s nursery school head teacher if he could stay with her until he was 16 please. She replied kindly, “No Emma, he can’t, he will get to be too big for the furniture here”. We made the move to mainstream primary, then to a special school and then to his current special school so, given that I hate change, we have done a fair amount of it in Joshua’s 17 years and of course, we survived. The difference is that this time we have a social worker by our sides who will help us to negotiate our way through this mysterious maze and help to pull us through – I am sure.

As we approach March 5th, I will update you on how we are handling transition and will outline the highs and lows that we are bound to face. I sincerely hope that our experience may help some of you who might also have a son or daughter who is approaching this critical age. I do not want to scare those readers who have ten year-olds now, but this Transition will come much faster than you think, so it is worth thinking about it sooner, rather than later. If I had read that in 2011, I know I would have ignored that advice, thinking that it was not relevant to me, but I would urge you not to be an ostrich like I was. Perhaps you can learn from my mistakes, so that you can hear the ‘transition’ word without a shudder.

You can read more from Emma in her article ‘Introduction to us‘ and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Imogen draws our Christmas raffle winners

Imogen with (L-R) our Head of Income Generation Terry Osborn, Neil form Specsavers and CEO Chris Jones
Imogen with (L-R) our Head of Income Generation Terry Osborn, Neil form Specsavers and CEO Chris Jones

We held our Christmas raffle draw on Wednesday 19th December and had a very special guest do the honours.

Seven year-old Imogen has had an impressive year having climbed Pen y Fan with a little help from our Innovation Centre and it only seemed right that she should help us with this very important job!

We were also joined by Neil Robinson from Specsavers, who named us as their charity of the year in south and mid Wales and have done amazing for us over the course of the year.  

We had our giant tombola filled with over 100,000 Christmas raffle tickets that our generous supporters had purchased and Imogen dived right in, choosing the three top prize winners and ten runners up.

The top three winning tickets are below and the rest will be available here soon. Check your tickets!

PrizeWinning Ticket Number
£5,0000801486
£1,5000406934
£5000668630

Making dreams come true this #GivingTuesday

#Giving Tuesday is on November 27th and this year we’re celebrating the amazing work our Innovation Centre do to help children achieve their dreams, however big or small. Children like Imogen, who we helped to achieve her dream of making it to the top of south Wales’ highest peak. You can help us make even more children’s dreams a reality. A gift from you, whether large or small, will make a positive difference to a young person’s life. You can either text WISH07 £5 to 70070 to donate £5, or use the form at the bottom of this page to donate online. Thank you.

Six year old Imogen was born with cerebral palsy and needs a wheelchair to get about. She often can’t take part in activities that her friends take for granted. She wasn’t even allowed to take part in her school sports day. Like most children her age Imogen is lively and adventurous and her inability to get involved makes her feel frustrated, sad and lonely.

At Cerebra, we don’t believe there is any challenge that can’t be overcome. When our friends at Specsavers arranged a sponsored walk to the top of Pen-y-Fan, we thought ‘let’s see if we can take Imogen with us’.

Help us work wonders for children this #GivingTuesday

Our Innovation centre adapted a special four-wheeled mountain bike and, with support from a team of volunteers, Imogen showed grit, determination and stamina to make it to the top. The smile on her face says it all.

With your help we can make more children's dream become a reality

With your help we can make more children’s dream become a reality

Imogen’s mum, Catherine told us: “Imogen is thrilled and excited to have had this adventure. She’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being given the opportunity to do things a child her age should be able to do is a real boost to her confidence and self-esteem. she really is over the moon.

If they can dream big, they can do big - never accept it's not possible!

If they can dream big, they can do big – never accept it’s not possible!

Imogen’s next dream? To become a Paralympian. Watch this space!

#GivingTuesday is on 27th November and you can follow our conversation on our social media – we will be using the hashtags #GivingTuesday and #Cerebra. We would also love to hear if you will be taking part in any fundraising – be sure to tag us! Please help us to make even more children’s dreams come true this #GivingTuesday.
Text WISH07 £5 to 70070 to donate just £5.

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Photos by Dimitris Leakis/ Athena Pictures

CIC come up with clever 3D printed solution

The Cerebra Innovation Centre (CIC) were recently asked for help with a small project, which really emphasises the usefulness of 3D printing and the computer age when trying to solve tricky little problems.

Going back only 6 or 7 years, this problem would have required meeting face to face, taking measurements, a day or two in the workshop and returning to fit the product; now with a photo and a few clicks of a mouse, CIC were able to produce a product in record time!

Bryher Hill, an occupational therapist in South Wales emailed CIC to ask for help. A cheeky young lad on her case load kept switching his wheelchair’s dual controls off so that he could override his helper.

Bryher explains: “I have always been aware of the CIC but haven’t needed to ask for their help until now!  I attended a wheelchair assessment for a young child that we work with and we found that he would try to turn the wheelchair power off whilst his carer was driving the wheelchair as it had dual controls.  I was concerned that if he were to do this in the middle of a road crossing or similar, it would be dangerous, so decided to ask CIC if they could design a cover for the control unit.  I took a couple of photos and some quick measurements at the wheelchair handover and sent them over to CIC.  They did the rest; for free! Ross’ skill and communication have been fantastic, and I am in awe of 3D printers and what they can do.  Thanks for your help.”

Bryher cleverly took some photos of the control unit- plan, side and quarter views, and drew a quick sketch of the unit including the outline dimensions. This was enough for the CIC designers to set to work. Using their high tech computer aided design (CAD) software called Solidworks, they generated a model of a part which could cover the control unit sufficiently that our cheeky young client could not switch it back on, but which was quick and easy to pop on and remove without causing any damage.

As if this was not high tech enough, with a few clicks of a mouse, the model was sent to another software package to prepare it for 3D printing, which in turn was wirelessly sent to the Ultimaker 3D Printer. 3D printers are able to make plastic parts and components by melting a thin filament of plastic which is fed into the machine, and a print head deposits the plastic in place according the model file that is uploaded. This machine was very kindly donated to CIC by Mr and Mrs Coventry who run Claire’s Project. The printer has seen hundreds of hours of use and has made some amazing parts which have helped children across the UK live their lives with a little more comfort -and fun!

If you have an idea that you think the team at the Innovation Centre would be able to help with, please get in touch! You can email them on [email protected] or give them a call on 01792 242688.

 

Here’s the journey from start to finish:

Eleven year old Alex rides the waves on a surfboard designed by our Innovation Centre

Alex having a great time surfing at The Wave Project

The team at the Cerebra Innovation Centre are dedicated to designing and making bespoke products that enrich a child’s life, giving them new experiences that wouldn’t otherwise be possible.

Created in partnership with Roger Cooper, our surfboard was designed for children with limited mobility and brain conditions. It allows wheelchair-bound adrenaline junkies to get out of their chairs and onto the water. The tandem design includes a supportive seat for the child and plenty of space on the back for an experienced surfer to steer it in the right direction. They have been a great success providing endless hours of fun to thrill-seeking children who could not otherwise experience the benefits and thrill of catching waves.

The latest to try one of the boards was 11 year old Alex who has quadriplegic athetoid cerebral palsy. Alex is from Eastleigh in Hampshire and was on holiday with her family in south Wales when she took part in a session organised by The Wave Project.

Following Alex’s session her mum Charlene told us: “Thank you so much.  Alex absolutely loved it and even asked if we could move to South Wales so she could surf more often. The photos of the day are amazing and, to be honest, brought a little tear to her eye. To watch her take part in something we thought she would never be able to access is just incredible and we really cannot thank you all enough.”

The Wave Project brings people together through surfing. Their evidence-based surf therapy programme is proven to help young people feel less anxious and more positive. They also run beach school projects to help children feel more engaged in education. Working with partner organisations and some amazing volunteers they are changing lives together.

Holly Sayce, South Wales Coordinator at The Wave Project said: “The boards have been essential to us as a charity in making our service fully inclusive of all abilities and disabilities. Used alongside our beach wheelchairs we can offer young people with mobility issues the chance to participate in our surf therapy courses or one-off private sessions.

The board most recently given to our Cymru project by Cerebra was used during our summer sessions and even on a chilly day at Aberavon beach just last week. We are looking forward to our next surf therapy year starting in Spring 2019 to see even more young people use the board and take part in our sessions.

Kindly stored by one of our partner surf schools, we are able to take the board to both of our delivery locations at Aberavon and Porthcawl. We now have three amazing Cerebra boards across our UK projects allowing young people in many locations to access surf therapy and experience the many benefits.

We are super grateful to Cerebra for this amazing piece of kit and for their determination and enthusiasm around improving accessibility for children and young people.”

Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible.  At Cerebra we believe that every challenge can be overcome.

Our Innovation Centre is a partnership project with the University of Wales Trinity St David.

Caldicot girl with cerebral palsy climbs South Wales’ highest peak

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Six year old Imogen Ashwell-Lewis, who was diagnosed with cerebral palsy at birth, reached the top of South Wales’ highest peak on Sunday 7 October in a specially-modified four-wheeled mountain bike.

She was joined by more than 40 people – including Specsavers staff from South and Mid Wales, charity workers and even army soldiers – some of whom were harnessed to her to help pull and push her along.

Imogen’s mum, Catherine, says: ‘Imogen is so thrilled and excited to have completed this climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure – she’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. She really is over the moon.’

The Pen y Fan challenge was co-organised by Cerebra and staff at Specsavers stores in South and Mid Wales, as part of their year-long charity partnership. The opticians are raising funds for the Carmarthen-headquartered charity, which currently supports 4,500 families across Wales.

Neil Robinson, West Wales regional chair for Specsavers, says: ‘Imogen and her family are an inspiration to us all, as are the services and support Cerebra provides to them and many other families across Wales. Watching Imogen complete this challenge is something I won’t forget in a hurry. I’m proud of our staff for giving up their time to help Imogen and the charity achieve something wonderful.

Everyone who took part at the top of Pen y Fan

Everyone who took part at the top of Pen y Fan

‘I’m thrilled we have been able to help raise awareness of the charity’s work, and hope it will lead to more young children with brain conditions discovering ways to live a better life with their families.’

In addition to our support services and research work, we also have an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

Imogen’s bike was a specially-modified four wheeled downhill mountain bike, designed and made predominantly for use by disabled people. It was created by Calvin Williams of Project ENDURO – a collaboration between experts at Swansea University, Gower College Swansea and the University of Wales Trinity Saint David. Project ENDURO kindly loaned the bike to Imogen for the climb and designers at our Innovation Centre made modifications to give Imogen the support she needed. Project ENDURO was supported by AgorIP, based at Swansea University’s School of Management, who are part funded by the European Regional Development Fund through the Welsh Government.

Terry Osborn, acting Head of Corporates, Trusts and Legacies at Cerebra, says: ‘We’re delighted to have joined the Specsavers team for the Pen y Fan climb. To be able to take Imogen with is us was a privilege and really does demonstrate that we don’t believe there is any challenge that can’t be overcome.

‘The invaluable fundraising support from Specsavers means that our Innovation Centre will be able to help more children to overcome their challenges and discover the world around them.’

This video shows Imogen reaching the top of Pen y Fan:

 

Big Thankxx to TKMaxx!

Terry, Cheryl and Amanda

Terry, Cheryl and Amanda

We would like to say a huge thank you to Cheryl Phillips, the Store Manager at TKMaxx Carmarthen. She applied for a TKMaxx community fund grant for Cerebra and we were given a fantastic donation of £1,000!

Cheryl said: “I’m delighted to be able to support such a worthwhile local charity!”

The cheque was presented to Terry Osborn, our Acting Head of Corporates, Trusts and Legacies and Amanda Tapp, one of our Fundraisers.