Tag Archives: CIC

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].

The twelve days of Christmas with our Innovation Centre

Christmas is a time for joy and for making dreams come true. At our Innovation Centre we believe that all children can achieve their dreams, however big or small. This Christmas we are celebrating twelve fabulous ways our Innovation Centre have made dreams come true this year:

  • A Tandem Surfboard which is helping children across the world experience the thrill of the waves

We want to help even more children to achieve their dreams, however big or small. So if we can help your family please get in touch with us and let’s make 2019 a year to remember.

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.

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 [email protected].

Innovation Centre help Livia gain independence

Mum Alanah recently approached our Innovation Centre with a challenge that would help maintain her daughter’s independence while keeping the whole family safe on shopping trips.

We received Livia’s diagnosis of cerebral palsy just after she turned 2, and when I was 8 months pregnant with my second child. Suddenly the logistics of looking after two children had become more involved. I knew Livia was struggling to walk, but I thought that after a bit of help she’d learn and would be running alongside the newborn’s pram or riding on a buggy board.

Initially after our second’s arrival things were pretty straight forward. Livia continued to ride in her stroller and the second was carried in a sling. When Livia did want to get out and walk she would hold onto the back of the stroller to steady herself and help me push that along. This resulted in lots of tripping and falls and was frustrating for all of us.

When our second was 4 months old Livia’s Kaye walker arrived. This was very exciting and gave us a step up in our independence and ease of getting around. Livia was willing to take short journeys with it, which was great when popping into shops that we could park outside or walking into the park from the car, or visiting a friends house. But anything further than a few minute walk was daunting for her and time restrictive for me. So the pushchair came back out, but how was I going to carry a newborn, push a stroller and bring her Kaye walker should she want to walk?

I felt terribly guilty if I didn’t bring her walker along. I felt I was stopping her from being independent when all of her friends and others her age were up and running freely. I purchased a tandem double pushchair and intended to carry the walker. We did one trip like this, ouch! My shoulder was so sore from where it had dug into me that it was obvious that this wasn’t going to be an option. So I went back to carrying the baby and slotted the walker onto the back seat of the pushchair.

Now the newborn was getting heavier and spending a lot of time ‘bouncing’ in the carrier. I’m not the biggest built person either, so carrying her everyday whilst pushing a toddler, all of the essentials you need and a Kaye walker was getting really tricky. There was also the challenge of when it rains or is really sunny. I don’t have a rain cover for the baby  carrier and we all know how hard it is encourage a baby to keep a sun hat on, so I really needed her to go back into the pushchair. I am part of a cerebral palsy support group on Facebook, so I posted on there asking other mums what they do. A lady responded telling me to give Cerebra a call.

I spoke to Ross Head in the Innovation Centre and explained my predicament. He told me he’d made a back carrier for someone before. He took the walker size and said it’d be with me in a few weeks. About 5 weeks later he emailed to say the carrier was on its way and how to use it. I am absolutely delighted with it. Ross took a standard backpack and added some straps and metal hooks to it. The walker hooks over the top and is secured in place by some bungee cords. At the bottom he has added some velcro straps that secure the walker from bouncing around when I walk. Once strapped in place it’s hardly any weight at all. I now can keep both the children in the shade or out of the rain, they can snack and play with toys whilst I get us all to our destination with relative ease.

I am now racking my brains of how to challenge Ross further, what else isn’t on the market that could help make my family life easier…? I hope my story gives someone the knowledge to give Ross a call and talk through your dilemma. He’s a wizard! Thank you Ross and Cerebra.

If you have a challenge that you think the team at the Cerebra Innovation Centre can help with, get in touch! You can contact them via email at [email protected] or by phone on 01792 483688.

Independence for Myles with our Oxygem

Our creative team of designers at our Innovation Centre and our Oxygem recently helped Myles to become more independent. Myles’ mum Vickie tells us more – and take a look at  the great video at the end!

We are a family of 4 – me, my husband Neil, Noah who is 6 and Myles who is 2 1/2.  Myles was born a seemingly healthy full term baby boy. But he struggled to thrive and was always catching viruses, we seemed to be at the doctors every week. He developed pneumonia at the age of 5 months and was hospitalised. We were sent home with medication but over the next few weeks he deteriorated and ended up being taken into intensive care where he required ventilation.

It was thought that Myles would be able to be weaned off oxygen as he had suspected broncholitis. After weeks in hospital trying to wean him it was obvious something else was going on with his lungs. For the rest of the year he was in and out of hospital having investigations and surgery. They decided to do a gastrostemy for additional nutrition as growth was a vital part of his care. After a lung biopsy and genetic screen he was diagnosed with Surfactant Protein Deficiency Type C. This is a condition which results in the lack of tension in the alveolar sack minimising the surface area for gas exchange.

Myles has been dependent on oxygen ever since meaning he always has to have an adult with him to carry the oxygen cylinder. Myles has done amazingly well hitting his milestones albeit a little delayed. He has started going to nursery just a few hours a week so I wanted to try and find something that would give him a little more independence.

I spoke to our care teams but there didn’t seem to be anything available through the NHS or privately. I even started to look at portable concentrators as these are much lighter but unfortunately these work on a pulse flow rate. A child’s breath intake is not strong enough to trigger the release of oxygen so these are only suitable for adults.

Through searching the internet I came across Cerebra and your Innovation Centre. The Oxygem looked perfect for Myles as he’s strong enough to push a trolley and it would enable him to have a level of independence. We were so overwhelmed he was accepted to receive one of the prototypes. He took to it straight away and now enjoys walking round the park with it and walking on the school run.

Myles’ condition means that as he grows he will hopefully be able to have stints off the oxygen. But it’s during levels of activity that he really needs more. The Oxygem enables him to move around with the cylinder when he needs it most. He is due to start school September 2019 and I think the Oxygem will really allow him to integrate with his peers. The fact that the handles can be changed for longer ones as he grows is brilliant.

Watch Myles in action

Can our Innovation Centre help your family? Don’t hesitate to get in touch for a chat.

Team Imogen smash the Swansea triathlon

Swansea tri group

The whole team

The 2018 UWTSD Swansea Triathlon has come and gone for another year, but for Team Imogen this has been an incredible start to our adventures in 2018!

Six-year-old Imogen Ashwell-Lewis, who has cerebral palsy, captained the charity team with a difference. She was supported around the course by a team consisting of the three designers from our Innovation Centre which is based in Swansea.

The day got off to an incredible start with our resident swimmer, Dan Cuthbertson taking the lead on the swim. This led on to the bike ride where Gerallt Devonald towed Imogen in style. Lastly Dr Ross Head smashed the last leg of the course and ran with Imogen to the finish. The race ended with the whole team joining Ross and Imogen to cross the finish line – full of smiles!

Imogeen in the boat

Imogeen in the boat

Dr Ross Head said, “ I am so happy to be able to say that we completed the Swansea Triathlon as team Imogen! I could not be more proud of the team and our Captain Imogen. She was an absolute star. She was so happy and waved and said hello to everyone all the way round! It is great to have been able to showcase the work we do in front of so many people. The organisers, the spectators and the other athletes were so supportive. I would really like to thank them all; they made a special day. Look out for us in future events- we are hooked and will be back.”

We would like to thank the filming crew from RS Components who followed our story, the incredible friends and family who supported us throughout the course, the organisers who put on such an incredible event and of course, Cerebra’s little super star Imogen who was amazing all day.

This is the start of our Triathlon Journey 2018 – Up next, the Superhero Series 2018!

You can show your support for team Imogen and their efforts through their Just Giving page. If you would like to find out more about the Superhero Series, get in touch with the team at [email protected]. We’re also looking for families to join us as part of the Superhero Series so please get in touch!