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.

Accessing Public Services Workshops for Professionals

Following on from the huge success of our Accessing Public Services Workshops, we are launching sessions specifically for professionals.

The workshops run from 10am -2pm and will help professionals to use our Accessing Public Services toolkit, helping to solve any difficulties families may be having with statutory agencies.

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand.  This workshop can support you by unpicking potential problems and giving you the tools you need to resolve them. Case studies from our LEaP project are used to help develop effective strategies to access services that families need, which are reinforced with a number of template letters to help challenge decisions made by public bodies. Ultimately, it is not in the interest of public bodies to have these commonly occurring problems and that most of these are capable of being resolved without great expense to those involved.

All of our workshops have been accredited by the CPD Certification Service. This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

To find out more or to book a workshop please contact [email protected]

For further information or to book a workshop, contact Derek Tilley at [email protected]

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.

Adapting life – a family’s story

One of our families has written a blog post about the many adaptations families with children who have disabilities have to make.

“Several years ago we were referred for an assessment by an OT to look at possible adaptations we might need to our house to make things more suitable for the girls needs then and in the future. We were in fairly uncertain times with no clear idea of which way things would go health wise, so it felt like we had to consider advice from any professional willing to offer it.

Following her assessment there were some fairly obvious things that were going to make a tangible difference once completed, like an easily accessible shower with a seat to rest weary legs. Level access to the property for wheelchair access and to prevent trips and falls when crossing the threshold. There were also some that came as a shock! Had we thought about how to get upstairs as things got worse? Would our stairs be suitable for a stairlift or if needed could we accommodate a through floor lift? These weren’t the conversations we ever thought we would be having.

As it happened she was a tad over zealous and the larger adaptations, thankfully, have never come to fruition……and breathe. But it certainly adapted our thought processes and our minds went on a journey of worry and stress that we hadn’t necessarily prepared for and actually weren’t needed.

But as I sit back and consider the past 11 years the adaptations we have had to make are many, but to the outsider many maybe frustratingly hidden leaving folk wondering what all the fuss is about!

Some of the things that have made a real difference to quality of life have been fairly unsophisticated like rubber bands round utensils and tubigrips on their arms to improve the messages sent back to the brain so eating and writing is more controlled. Getting seating and sleeping spaces right have prevented pain and spasms and enabled rest and ability to stay still! This might have been with bespoke specialist seating that come at an eyewsteringly high price or, with trial and error, the correct cushion or pillow shoved into various corners to prevent bumps or prop up legs!

We no longer have an old icecream tub to hold our household medications…we have a whole double cupboard dedicated to the bottles, tubes of creams, spacers, inhalers, dosset boxes and all other necessary medical paraphinalia that keep them well & sparkly!

We have walls decorated with visual resources painting a picture of how the days are (in theory) going to pan out. Not too detailed so minor changes can’t be coped with, but detailed enough to be the lynchpin for the day. Essential to help with the difficulties with transition and inherant need to control…ahhh! Visual prompts to accommodate one child with short term memory difficulties & the other struggling with executive functioning & concentration.

The lounge which in theory is our calm space is filled with peanut balls, exercise mats, and a human sized bowl for spinning and chilling in that provides just enough sensory feedback to keep our sensory bunny calm! Though doesn’t necessarily calm everyone else as they create an undesirable trip hazard in the thoroughfare!

Adaptations to meal times to accommodate the sensory culinary preferences (cottage cheese, chickpeas and anything burnt!) And a constant supply of crunchy snacks, chewing gum or chewy items to prevent any more bite marks in furniture or chewing of clothes due to the constant oral sensory seeking behaviour.

Normal planning doesn’t do for us! Logistical management takes on a new level considering fatigue, sensory overload, medications, splints, ear defender’s, weighted jackets, visuals and also how to practically manage 2 children in wheelchairs when their maybe only one adult!

Adapted bed time routines, that involve so much more than bath, teeth, pj’s story & bed.

Adapted life plan! Not just avoiding pomotions & working part time hours, but a whole different career, a whole different mindset. How do you get the flexible working that takes into account the days off school due to frequent sickness or school refusal, the micro management of meetings or appointments, tests & all the necessary paperwork, DLA, EHCP, carers assessments? Oh yes & the financial restrictions put on you when you receive carers allowance! You can have it if you care for someone more than 37 hours, but you can’t claim it twice for looking after 2 people & by the way you can only earn  £100 a week! If you have a career that you trained hard for actually getting a contract for so few hours is nigh on impossible! The solution I have fallen into is effectively being my own boss, working hard when I can so it doesn’t all fall apart when I can’t! Trouble is that level of juggle sometimes leads to me falling apart!

Emotional adaptations you have to make along the way can have massive impacts. Relationships are tested as you effectively tag team the caring role, no time to talk or process the latest appointment, diagnosis or meeting about school. The different timings in the processing of it all as one crashed & grieves the other has to up the ante! Friendships are tested and sometimes don’t survive, so a new support network formed. Extended family roles adapted as the expected role of grandparents is morphed into respite carers, and comes with it a whole set of logistical & emotional challenges.

But then there’s the positive adaptations that have taken place. The appreciation of the smaller details, celebration of the moments when unexpected milestones are achieved that otherwise may have been taken for granted! A different level of understanding your child inside & out! The involvement of family to achieve a special trip means they get to be part those intimate moments that they may not otherwise have been part of…Disneyland, trips to London.

The adaptation of our attitude on life! Live for today not for tomorrow, learning to dance in the rain & not waiting for the storm to pass, remembering it’s not what happens that’s important but what you do about it! But really learning that you can’t change the situation you haven’t chosen to be in, but you can change the way you think about it and embrace the necessary adaptations rather than fight against them!”.

You can read this, and other blog posts, here.