Author Archives: Sarah Jones

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 cic@cerebra.org.uk or by phone on 01792 483688.

Six year-old Jake-Junior to run for Cerebra

Jake-Junior

Jake-Junior

When Jake -Junior cheered his dad from the side-lines as he completed the London Marathon, there was only one thing he wanted to know – how he could get his hands on a medal too?

Six year-old Jake -Junior has ADHD and sensory processing difficulties, which leave him with a lot of anxiety. Due to his condition, Jake-Junior has lots of energy and is always on the go but he can sometimes have problems with impulse control and can get frustrated very quickly, especially at school.

Despite the challenges he faces every day, Jake -Junior wanted to follow in the footsteps of dad Jake and take on his very own running challenge to help children who have conditions like his.

Jake-Junior showing his run time

Jake-Junior showing his run time

His Mum Nicola explains why Jake – Junior decided to fundraise for us: “Cerebra helped us with his sleeping issues, making sure we all get a good night’s sleep, and gave advice on his sensory problems. They also have a fantastic library to lend out toys and books”.

His energy has meant that he has been doing extremely well with his training. Mum Nicola said: ‘Jake-Junior doesn’t have a “stop button” – if he’s awake, it’s time to run! He’s already starting to train for his 5k run with sit-ups, push ups and short runs.

“Me and his Daddy are immensely proud. He’s such a lovely boy and a bit of a charmer. All his teachers love him! He has been training every day so far and even wanted to do the race on his own though we thought it was best if dad went along!”

Jake-Junior will be running Birmingham’s 5k Big Fun Run on 8th September and you can help him reach his fundraising target through his Just Giving page.

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 cic@cerebra.org.uk. We’re also looking for families to join us as part of the Superhero Series so please get in touch!

Storytelling evening raises funds

Paul Raven with Box Coordinator Melanie Clark

Paul Raven with Box Coordinator Melanie Clark

A new Carmarthenshire business has raised funds for Cerebra through a series of storytelling sessions.

Tea Traders opened in November in Guildhall Square Carmarthen and started hosting a Cerebra collection box shortly after.

Owners Paul Raven and Nick Lee then decided that they wanted to throw an event to support the charity and came up with the idea of holding a series of storytelling sessions with local storyteller Liz Evans.

Liz led a fun interactive session for children that focussed on local myths and legends. She also took part in an adult’s evening which was based around Celtic legends and local stories.

Both events were a huge success and have helped Tea Traders raise a total of £125.12 for Cerebra so far.

If you are a business, you an find more information about how you can help us by hosting a collection box here.

Samuel cheers buddy to marathon glory!

Dustin with Samuel and his parents and Cecilia Bufton

Dustin with Samuel and his parents and Cecilia Bufton

On Sunday 22nd April, American Dustin Erhardt ran the London Marathon for his buddy Samuel and to raise money us.

Dustin met 7 year-old Samuel through the organisation I Run 4 which pairs runners and special needs children and adults so that the runners are motivated by their special buddies, and the special friends can finally find a way to run even if they can’t literally do so themselves.

Dustin, who lives in North Dakota in the USA explains: “I had the honour of being matched with an amazing little boy named Samuel, who has autism. He has become like a nephew to me and while I was training we exchanged pictures, videos, medals, encouragement and so much more. In training, with every mile that got tough, I knew he was right there with me encouraging me to keep going.

Cerebra has given me the amazing opportunity to meet Samuel and run the London Marathon with him there cheering me on in person. Samuel’s little sister Phoebe has a rare genetic condition and she suffers from epilepsy, autism, delayed speech and a hearing condition. So for me, supporting a charity like Cerebra is not only important for all children it is very near and dear to my adopted family. Together we can bring awareness and support for all of those that live with brain conditions”.

Dustin, Samuel and Phoebe

Dustin, Samuel and Phoebe

Cerebra have supported Samuel’s family and his little sister Phoebe so it was great that Dustin could run and raise money for us.

Samuel and Phoebe, along with mum Gemma and our Events Coordinator Cecilia Bufton waited at the finish line on the day, eager to cheer Dustin on as he approached the end of the gruelling 26.2 mile course.

Gemma said: “Samuel was so excited to be at the finish line to welcome Dustin home.

We’d tied Cerebra balloons to the railing so that he would be able to spot us and when he came round the corner Samuel’s face was a picture! Samuel coped really well with the noise and the bustle – the disabled waiting area was a lot quieter and his ear defenders helped. He really liked watching all the mascots – particularly someone dressed as Big Ben!

It’s been great to finally meet Dustin and we’ve loved having him to stay with our family. We’ll definitely keep in touch. It’s been a fantastic experience.”

Dustin enjoyed the whole experience: “I’m so grateful to Cerebra for giving me the opportunity to run in the London Marathon. On the day it was quite hard – very warm with the sun beating down – and I decided to slow my pace to make sure that I made it to the finish line.  In the end I finished in 5hrs 44 mins.

Samuel and Dustin

Samuel and Dustin

It was an amazing experience – the sights of London, the sheer number of people, and the spectators were incredible, handing out orange slices and chewy sweets for sugar. So many people were running for charity, it was emotional and motivational.

To finally meet Samuel and his family after two and a half years of being in touch was indescribable. They are my family now too. To run for Cerebra and help raise awareness for brain conditions as well as support such a great cause was so motivating for me.”

Dustin has so far raised an incredible £2248 for Cerebra, surpassing his initial target of £2000. You can still donate through Dustin’s Virgin Money Giving page.

Tom’s writing slope makes him the envy of his classmates

Our Innovation Centre team recently helped a young boy with his writing skills – and made him the envy of his classmates.

Tom’s mum Claire recently approached the Cerebra Innovation Centre after seeing a post about one of their products, the Doodle on our Facebook page.

She had been looking for some time for a writing slope which would suit the needs of her son, nine year-old Tom who as well as being diagnosed with sensory processing disorder and Autism, also has hypermobility in his arms.

This meant that when Tom was learning to write, he was curling himself around the desk. At first, it was thought that this was because he is left handed and was finding it difficult to get the correct position to be able to write with his left hand.

One of Tom’s occupational therapists suggested getting him a writing slope to help with his posture while he was writing, but the first one that they tried slid while Tom was trying to use it.

Then Claire saw a post on our Facebook page about the Doodle, a writing slope designed by the team at our Innovation Centre.

The Doodle was developed for any child who may need a writing slope to aid their writing, drawing, posture and hand control. We have used magnets and a gas strut for quick removal and changing of the ingenious paper and book holding rulers, whilst including a set of pens stored in an inventive swivelling holder to aid children with reduced motor skills. We believe these innovative features make it the best and most beautiful writing slope available anywhere.

With a few adjustments to the design to make it suitable for the left handed Tom, it was ready and they haven’t looked back!

Tom has been taking his new writing slope in to school and it has made him the envy of his class mates! Claire said:

I think his face says it all in these pictures! He took it school today and his whole class were super impressed with it. I have never seen boys so excited by a hydraulic lid! Usually he hates going to school, but he was excited to show off the Doodle today!

Can the Cerebra Innovation Centre help you? We’d love to hear from you.

Running, cycling and donuts!

Ross Head sneaking a donut

Ross Head sneaking a donut

The Cerebra Innovation Team are officially 5 weeks away from competing in the Swansea Triathlon 2018, with Captain Imogen to lead the team.

Their intense training regime, consists of the three P’s: purpose, progress and protein. It’s all about the green machine smoothies, intense hours of cardio and… donuts? But at least the team are getting some cardio in!

They are training hard to make sure they keep up with Captain Imogen, who, although she’s only 6 is keeping her team on their toes.

The shark of the team is Dan Cuthbertson, who will swim Imogen to victory. Dan is a seasoned surfer who won’t be defeated by anything in the water.

Gerallt getting a bit lost

Gerallt getting a bit lost

The team’s resident biker, Gerallt Devonald, is training hard to smash the cycle course, map in hand, water bottle at the ready, Gerallt will be towing Captain Imogen to triumph – if he can find his way!

Then there’s Dr Ross Head and, even though he’s eating quite a lot of donuts, he is training hard to pick up the running segment of the triathlon. Ross is smashing the evening runs and even includes a lunch time run to channel his inner Mo Farah for the day.

Captain Imogen

Captain Imogen

We would also like to say, a huge welcome and thank you to our new team mate Carol Evans, who is joining us from our wonderful charity partnership with Specsavers this year. Carol competed in two triathlons last year and the triathlon bug bit!

If you’d like to support the team you can make a donation by texting CICT18 and the amount you would like to give to 70070, or by visiting the team’s Just Giving page. All the funds raised will help our innovation center to keep coming up with bright ideas for brilliant kids. 

We are coming for you Swansea Tri!

Understanding and Reducing Sleep Disorders in Children with Developmental Delay

Dr Caroline Richards and Professor Chris Oliver from the Cerebra Centre for Neurodevelopmental Disorders talk about the Sleep Project which aims to understand and reduce sleep disorders in children with developmental delay.

Why is the Sleep Project important for families?

Sleep is a universal phenomenon, influencing almost every human activity. We need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.

Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.

Despite this great need, research on sleep in children with neurodevelopmental disorders is sadly lacking. We know the least about sleep in the children for whom sleep is arguably most important. The Sleep Project, conducted by the Cerebra Centre for Neurodevelopmental Disorders will change this. We lead cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.

What progress has the Sleep Project made since Cerebra began to support it?

Projects: We have completed five core components to date.

  1. We have conducted a large scale interview study, speaking with fifty parents and carers of children with Angelman syndrome (a rare genetic syndrome associated with sleep problems) to identify their concerns and priorities in sleep.
  2. We completed a cross-syndrome sleep survey with over 190 children with Angelman syndrome, Smith-Magenis syndrome, tuberous sclerosis complex and autism spectrum disorder. This provided robust evidence of syndrome specific sleep problems and unique pathways to sleep disturbance. We found that knowing the cause of a child’s neurodevelopmental disorder is essential to ensure accurate understanding of their sleep problem.
  3. We have completed the largest direct study of sleep using Actigraphy in children with Angelman syndrome, Smith-Magenis syndrome and Autism Spectrum Disorder. In this study over 100 children wore sleep trackers (Actigraphs) for a week, to provide direct evidence of their sleep-wake cycles. This resulted in the, largest, most robust international data on sleep patterns and the daytime impact of poor sleep in these rare groups.
  4. We have collected novel night-camera video data on children in the Actigraphy study and are analysing these data to better understand what children do when they wake up. We will use our understanding of waking and settling behaviours to develop more tailored interventions for sleep.
  5. Finally, we have conducted an in-depth study of sleep and parental stress, through collecting Actigraphy, self-report and bio-marker (cortisol) data from parents of children with neurodevelopmental disorder. This will enable us to quantify the impact of children’s poor sleep upon parents and carers.

Families who have taken part in these studies have received detailed individualised feedback reports, and the results of these studies have been published or are in review at leading academic journals.

Public Knowledge: A key aim of the sleep project is to ensure that as we improve scientific understanding of sleep in children with neurodevelopmental disorders, we simultaneously share that information with families, clinicians and educators. Research traditionally takes 10 to 17 years to influence real world practice – that is an unacceptably long time. We are committed to reducing this lag. In addition to publishing our research in high-impact academic journals and speaking at scientific conferences, we provide regular talks on sleep to inform and update parents and professionals. These have included talks at schools, parent support conferences, national professional networking events and large public conferences such as The Autism Show.

In addition to this, we co-produced a Sleep Guide for parents, in partnership with Cerebra which is freely available via Cerebra’s website.

The guide explains how problems with sleep may develop, the specific nature of sleep problems in children with rare genetic syndromes, how to assess sleep problems, and how to intervene to improve sleep. Alongside the guide, we also co-produced brief Sleep Cards to be used by Cerebra’s Sleep Service. These provide bite-size chunks of information on sleep interventions that the Cerebra Sleep Practitioners can give to families they are working with, to help parents and carers to implement evidence-based sleep interventions.

We have also launched new sleep content on our dissemination website: Further Inform Neurogenetic Disorders (FIND). The site has had over 14,000 page views since it was launched and continues to attract a high rate of hits. The sleep section on FIND contains accessible information on topics such as: current sleep knowledge, why it is important to investigate sleep in people with genetic syndromes, what interventions are available for sleep and the sleep research that we have been conducting.

Investing in People: The Sleep Project will increase expertise in Sleep Research in the UK. Through the first four years of the project, we have trained two PhD, seven Clinical Doctoral, three Masters and 10 Undergraduate students. The majority of these students are now working in either research or clinical psychology and therefore this investment in training has increased UK expertise in sleep problems in neurodevelopmental disorders.

What will be the longer term impact of the Sleep Project for families?

The long term goal of the Sleep Project is to improve sleep outcomes for children with neurodevelopmental disorders, ensuring that they have the same opportunities to thrive in life as their typically developing peers. With sustained funding, the Sleep Project will ensure that children with neurodevelopmental disorders have access to tailored assessments and timely interventions to ensure the best quantity and quality of sleep for them and their families.

You can find out more about the Sleep Project here. You can also find out more about the work that the Cerebra Centre for Neurodevelopmental Disorders does here.

Star Volunteers Take on Fun Run

Samuel and Angel after the race

Samuel and Angel after the race

On 24th March our star volunteers Samuel Turner and  Angel Jolly took part in the Brentwood Fun Run to raise funds for Cerebra.

Samuel and Angel have done lots to help Cerebra since they first starting volunteering for us, from holding bake sales to placing our collection boxes in local businesses. But they decided they wanted to try a new challenge – that’s when they decided to take part in the Brentwood Fun Run.

The event, part of the Brentwood Half Marathon, was originally meant to take place on 18th March but had to be postponed because of snow. Not to be deterred by the weather, Samuel and Angel finally managed to complete the race the following week.

As well as raising money for Cerebra, the pair each had very personal reasons for rising to the challenge. Samuel was honouring his best friend who sadly passed away in 2009 and Angel was running for her brother Connor who has Cerebral Palsy.

The pair have a Just Giving page through which you can show your support.

Captain Imogen and her brave triathlon crew!

Captain Imogen

Captain Imogen

The Cerebra Innovation Centre design team will be embarking on a triathlon adventure this year with their very own triathlon pilot, Imogen Ashwell-Lewis, in charge! Their first target is the Swansea triathlon on 20th May.

The team met Imogen a few years ago when they designed and made a beautiful tiny wheelchair that allowed her to move around her home and play with her brothers and her toys. The additional independence it gave her was amazing, as was the friendship they developed with Imogen and her family.

Now 6 years old and having been turned away from many sports due to her cerebral palsy,  Imogen leapt at the chance to pilot the CIC crew.

While the Innovation Centre team have learned lots about triathlons through designing and making the equipment for Poppy a couple of years ago, they’ve never actually competed in one! So this will be a chance for them to put their own equipment to use.

The bright idea came from Ross Head: “When we thought about finding a triathlete/pilot for this year, I just mentioned that maybe we should start a team and the guys agreed – which I had not expected! That was the day Team Cerebra was born!

“Dan is a strong swimmer and surfer so it made sense that he would swim and tow Captain Imogen in the boat. Gerallt loves cycling and is keen to tow Imogen to victory. Of all the sports I do, running is not one of them. So I’ve taken one for the team and am learning to run, training on the streets where I live until I am fit enough to venture further afield”.

The Innovation Centre Team

The Innovation Centre Team

“I am super excited to dust off my speedo’s and swim with Imogen and the team. But I need to get practicing as my swimming skills have been replaced with a belly. To the pool I go! We’re really looking forward to it, and I think we stand a good chance at winning!” (Designer Dan)

We’re looking forward to following them on their journey to glory and hope that Imogen knows what she’s letting herself in for!

If you would like to show your support to the team, you can donate by texting CICT18 and the amount you would like to donate to 70070 e.g. CICT18 £5 to 70070, or by visiting their Just Giving page.