Author Archives: Sarah Jones

Travel insurance covering children with disabilities

travel insurance covering children with disabilities

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

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

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

Insurance companies

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

Other things worth thinking about before travelling

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

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

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 These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.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


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

Cara draws winning summer raffle tickets

Cara with CEO Chris Jones and some of our fundraisers

Cara with CEO Chris Jones and some of our fundraisers

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

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

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

Cara to take on duathlon challenge

Cara Readle

Cara Readle

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

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

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

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

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

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

You can sponsor Cara through her Just Giving page.

Epilepsy and getting a better night’s sleep

Jonah and Louise

Louise recently contacted our Sleep Service for some advice to help 9-year-old Jonah get a good night’s sleep. Jonah has recently been diagnosed with frontal lobe epilepsy and Louise told us their story.

Jonah has never been a great sleeper and not having a good night’s sleep just became a normal part of life for our family.

For a while we were trying to push him to sleep in his own room but then we starting noticing that something wasn’t quite right. He was making strange, rhythmic movements in his sleep.

We saw Jonah’s GP who told us to keep an eye on it but it steadily got worse. He would be waking up 3-5 times a night and this eventually developed into dystonic posturing – his right arm would go in the air and his leg would go stiff.

We started filming Jonah at night so that we could show the GP that his condition was worsening and of course, having so many seizures every night meant that none of us were getting much sleep. It was taking a toll on all of us and I began to feel extremely guilty about having tried to make him sleep in his own room when he’d been having seizures all along.

By February 2018, Jonah had been referred to an epilepsy specialist and we finally had enough evidence to show that Jonah was getting worse and they were able to diagnose him from this. They put Jonah on medication to help manage his seizures and he responded straight away which was great but it made him very tired in the day. This wasn’t helped by the fact that he still wasn’t settling well and he still didn’t want to be in his own room – part of me still wanted to keep an eye on him in case he had a seizure.

That’s when a friend suggested that we contact Cerebra’s Sleep Service for support. We received our sleep pack and immediately started using some of the tips that were in there.

Self-settling was the most important thing for us to get Jonah into the habit of doing because it meant that we wouldn’t have to intervene if he did wake in the night – he would just settle himself. We used the gradual withdrawal method to so that it was a gentler process for both us and Jonah and if he woke up during the night, we would just take him straight back to his room.

I first noticed an improvement about two and a half weeks in when Jonah got up in the middle of the night to use the bathroom and took himself straight back to bed. We were thrilled!

We’re now six months down the line and the change in not just Jonah but the whole family is unbelievable. I had been finding it more and more difficult to function in work because of the lack of sleep but now I’m doing much better and Jonah is also doing much better at school because he is now able to concentrate much better. We’re even moving him into his own big bedroom.

The Cerebra Sleep Service has been great because a lot of the sleep advice you usually find is for much younger children, but their advice really helped not just Jonah but the whole family finally get a good night’s sleep!

You can find out more about our Sleep Service and the support we offer here.

Effective interventions for long term change

At the Cerebra Centre for Neurodevelopmental Conditions, University of Birmingham, the aim is to identify the causes of the most pressing problems for children with neurodevelopmental disorders in order to develop effective interventions that are delivered at the right time to enable long term change.

Our work

What’s the problem? It sounds like a straightforward question but it’s not. Many children with neurodevelopmental disorders experience a range of problems that impact negatively on their lives and the lives of their families. These problems change as the children grow up and include autistic like conditions, self-injury and aggression, sleep disorders, and emotional and mental health problems.

Critically, the chance of having one of these problems is linked to the cause of neurodevelopmental disorders. Children with autism who cannot speak are more likely to self injure, children with Smith-Magenis syndrome are much more likely to have problems sleeping and children with tuberous sclerosis complex are more likely to experience hyperactivity and be impulsive. Once we know the cause of a neurodevelopmental disorder we now know the chances of a specific problem occurring and this makes it possible to plan for the future and develop early intervention strategies. At the Cerebra Centre we have identified specific problems in more than 20 neurodevelopmental disorders.

What causes these problems? By studying the problems we have identified in specific neurodevelopmental disorders, we have been able to identify specific causes. For example, we have shown that pain resulting from untreated gastro-oesophageal reflux (severe heartburn) can be a cause of self-injury, breathing problems can make sleep problems worse in Smith-Magenis and Angelman syndromes and problems with flexible thinking can lead to severe anxiety in social situations. At the Cerebra Centre we can make specific recommendations for interventions and also promote early intervention targeting these causes.

How can clinicians, teachers and parents identify the cause of a problem? Whenever a problem develops, careful assessment is critical to choosing the right intervention. Knowing that the chance of a problem occurring is higher in some neurodevelopmental disorders than others means that priorities for assessing causes can be tailored for individual children. However, assessment of causes is difficult when children have very severe disabilities and limited communication.

New assessments and road maps for the decision making process during assessment are needed to make sure the cause of any problem is identified accurately and efficiently. This means the right treatment is more likely to be delivered quickly. At the Cerebra Centre we have developed new assessments for children who are severely disabled and nonverbal to identify clinically significant low mood, pain, unusual social behaviour, impulsivity and overactivity and repetitive behaviours. We have also made significant progress on protocols for the assessment of self-injury and sleep disorders.

Our information

It is estimated that it takes between 10 and 17 years for a research finding to be implemented in practice. That is too long. We do publish the results of our research in scientific journals so that they are subject to peer review and made available to other researchers and clinicians. However, we also provide information based on our latest research at parent and practitioner meetings, the FIND website, presentations at professional and scientific conferences and websites such as Researchgate. At the Cerebra Centre we deliver about one presentation a week at meetings, our research papers are read 150 times a week on Researchgate and elsewhere, 200 parents very year receive an individualised report on their child and around 14,000 people have visited our website.

Our team

At the heart of the Cerebra Centre are the people who do the work. At any one time we will have between 30 and 40 people working in the Centre. Some are Postdoctoral Research Fellows who completed their PhD in the Centre and have gone on to win their own grants to fund further research and support further PhD candidates. This generational progression has been critical to the success of the Centre. Other people who work in the Centre are Undergraduate, Masters and Clinical Doctoral students on placement. The core team supervise the work of these students who make a significant contribution whilst being trained in research methods. At the Cerebra Centre we have trained more than 50 Doctoral students and 30 Masters students. Last year, Postdoctoral Research Fellows associated with the Centre were awarded close to £500,000 in grant funding in addition to funds provided by Cerebra.

Our future

The Cerebra Centre is now well established with an international reputation, the largest database of rare genetic disorders in the world, a team with clinical and research training, support from parent groups, effective dissemination, demonstrable impact, a strategy for future development and a clear purpose. The task now is to convert our past and future findings into effective assessment and intervention delivered at the right time in the right way. At the Cerebra Centre we will continue to develop innovative, accurate and efficient assessments to identify the causes of the problems experienced by children with neurodevelopmental disorders and develop new interventions that can be delivered at the right time to enable long term change.

You can find out more and watch a short video about our work at Birmingham here.

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.