Category Archives: Uncategorized

Samuel and his family visit Cerebra HQ

Samuel, Angel, Jacky and Barry in our Fundraising Office

Samuel, Angel, Jacky and Barry in our Fundraising Office

We recently had some very special visitors at Cerebra HQ. Samuel Turner, his family and friend Angel are loyal supporters of Cerebra and have done lots if things to raise money for us including a bake sale at their local fete.

The whole family made the trip from their home in Essex to Cerebra’s Head Office in Carmarthen and spent the day in our fundraising department. They got to know some of our fundraisers and Samuel even took a donation from a supporter!

Samuel now volunteers for Cerebra by distributing our collection boxes in his local area and has even appeared on his local radio station to talk about Cerebra and the work we do.

It was lovely to meet you Samuel.

Support for Global Developmental Delay

Our Regional Officer Lilly Fahey recently helped Emma, mum to 12 year old Rory who has Global Developmental Delay. Emma told us their story.

“I am a mum; my son Rory will be 12 years old this month.

Ever since he started primary school he has been ‘Statemented’. Before Rory started Primary school we had ‘Portage’ come round to my home to see Rory and help encourage him to speak. When he was at pre-school they were concerned that he wasn’t talking and he wasn’t able to keep up with his peers.

He was born 4 days late and was delivered by emergency Caeserian. He had trouble breathing he was in the Neonatal unit for just over 2 weeks in a incubator. He had trouble feeding and was bottle fed.

He struggled throughout mainstream school, most of Primary and the start of Middle. He could not cope there at all. I used to get phone calls every day to say I had to go and collect him because he was struggling. He was under the Senco, he had one-to-one support and also had one-to-one at Primary. He had one-to-one every day at Middle school.

I had a meeting with the Senco in the end because Rory refused to go to school and she actually said, and I was thinking along the same wavelength as her, that ‘Rory will not cope in year 6 or when he gets older’. By that time I was so relieved that the Senco could see that he was struggling. About a year and a half ago Rory was Diagnosed with Global Developmental Delay (GDD). The Paediatrician said that even though he’s 11, Rory has the mental age of 5 years old.

In year 5 at Middle school we pushed for a specialist Provision for him. He is now attending a specialist school. He started last September and he now loves going to school. He does have his moments every now again. He goes to school by Transport every day, which he loves. He’s a different boy now.

Also not long ago he was diagnosed with a few heart problems including ‘narrowing of the arteries’ and ‘hole in the heart’. One of his valves isn’t working as it should be. He has sensory issues, anxiety issues and is also on the autistic spectrum.

Rory’s father and I divorced back in 2010 but I am now remarried. I got married again in 2013. Rory Loves my hubby Neale, he gets on really well with him. My hubby gets on well with Rory.

Also I’ve not long ago been diagnosed with (GDD) Global developmental delay myself”.

Alex Braves Coastal Path Trek

Alex, Jess and Ezra training on the Coastal path

Alex, Jess and Ezra training on the Coastal path

Never one to shy away from a challenge, 71 year old Alex Elsaesser is preparing to tackle his biggest one yet – walking the entire 60 mile stretch of the Ceredigion Coastal path, all in 24 hours.

Alex has worked for Cerebra for 16 years and this isn’t the first time that Alex has taken part in an event to raise money for us. He ran the London 10k for a number of years, even taking part with his daughter Alissa who is also a volunteer for Cerebra.

This is to be Alex’s last challenge for Cerebra and he wanted to make it a memorable one!

Alex said: “We have been training for months. I even joined Weight Watchers because I was overweight and have lost 18 lbs. During my time at Cerebra, we have helped so many disabled children and their families.”

Jess Elsaesser and Ezra Mathias will be joining Alex for the trek. Ezra is raising money for Cerebra and the British Heart Foundation. Jess is raising money to purchase sensory toys for the Children’s Ward at the Royal Gwent where she is a staff nurse.

All three are committed to do the walk on July 8th. They will be helped by their training coach, Julie Pritchard who will be bringing food, fresh clothes, drink and moral support for this difficult challenge.

If you would like to sponsor Alex, Jess and Ezra, you can do so through their Just Giving page.

Angelicus Celtis Wow Britain’s Got Talent Judges

Angelicus Celtis during one of their shows

Angelicus Celtis during one of their shows

Our Ambassadors Angelicus Celtis wowed audiences on Saturday’s Britain’s Got Talent with their stunning rendition of Nessun Dorma.

Angelicus Celtis are avid supporters of Cerebra and are always eager to be involved with the local community. They recently held a successful “Sing and Play” event where they invited our families to come along for a morning of singing and fun.

They have also raised money for Cerebra through several of their concerts and supported us at several major events.

The choir is made up of a group of school girls from Llanelli and entered the competition determined to try and win for their hero teacher Mr Williams, who was recently in a car accident. Mr Williams and his wife came up with the idea of forming Angelicus from the ranks of the Hywel Girls’ Choir & Hywel Boy Singers.

They have done Mr Williams proud so far but now they need your help! They need your support to help them win Britain’s Got Talent! Every vote counts and will help them get to the final. It’s really easy to vote, all you have to do is download the Britain’s Got Talent app for your smartphone or tablet and follow the instructions when voting opens during the live shows.

 

 

 

 

 

 

Let’s get them to the final!

Watch their emotional first audition:

 

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Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Happy 15th Birthday Cerebra!

Birthday brochureWe are celebrating our 15th birthday by publishing a special brochure celebrating some of our achievements and looking forward to an exciting future.

Since the charity was founded in December 2001 we have helped thousands of children with brain conditions and their families through research, information and direct, on-going support.

During the last eighteen months we have taken the opportunity of strengthening our mission, key purpose and identity by undergoing a re-branding exercise. As you’ve probably noticed, in 2016 we unveiled our fresh new look. Families remain at the heart of what we do – we listen to them, we use what they tell us to inspire the best research and innovation and then we help them put the knowledge into practice so that they can discover a better life together.

Our new logo and strapline embody our spirit of optimism and discovery – we are the charity that works wonders for children with brain conditions. Our positivity helps families see past every barrier; a spirit of relentless discovery drives everything we do and we recognise that our researchers, practitioners and families go further when they travel together.

In our birthday brochure we are taking the opportunity to celebrate not only some of the great work that we have done, but also the exciting things that are to come.

We are proud of how much we have grown in the last 15 years and we are excited about what the future holds. Thank you being with us so far. We hope that you will continue with us on our journey – you never know what we’ll discover together.

You can download our birthday brochure below:

Cerebra Birthday Brochure

New look for Cerebra!

new-lookWe are delighted to unveil a fresh new look for Cerebra!

Over the past year or so we’ve been taking a good look at our brand. Our brand is everything that comes to mind when people think of us. So we wanted to make sure that our brand is the best that it can be – easily recognised, easily understood and great at attracting support.

Our Vision – what we want

Our vision is that every family that includes a child with a brain condition will have the chance to discover a better life together.

Our mission – what we do

We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

Our key messages

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. But we don’t believe there’s any challenge that can’t be overcome.

So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we find out together makes life better. It opens doors to discovering the world.

It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together.

How we look

We have a new visual identity too – a new logo, colours, font, images which all complement our vision and our mission.

cerebra colours

You’ll notice the changes everywhere – our website, social media, in our printed materials and in the way we talk to you. It will take us a little while to make all the changes though – so please bear with us.

We are thrilled with our new look. We hope you like it too and that you’ll join us on our journey of discovery.

Dr Eduard Gratacós – Why health starts before birth

Dr Eduard Gratacós

Dr Eduard Gratacós

Our research team at the University of Barcelona looks at identifying deviations in foetal brain development as early as possible to help prevent and/or minimise childhood disability.

Dr Eduard Gratacós explains his journey into research and why he believes that health starts before birth:

“I was trained in Obstetrics & Gynecology in the early 1990s. Soon after starting my medical residency, I found two new worlds I was not aware of, the fetus and research. Two discoveries that changed my ideas about what I wanted to be in my professional life.

Concerning fetal life, I had always thought that Obstetrics was just helping women to deliver. It struck me to realise that inside the mother there was the infinite world of another patient. Twenty-five years ago this concept was still quite new. Ultrasound had just revolutionised pregnancy follow-up. The mystery of what was happening inside the womb, hidden for all the history of medicine and humanity, was now becoming visible, and in real time! We were just in the beginning, but it was so amazing to think about the fetus as a patient, just as a child or an adult was. This notion impressed me so profoundly that I decided to dedicate my career to fetal medicine.

Research was my second discovery. During medical school, my ideas about me in the future were of a surgeon spending most of his day performing complicated operations. Just a few weeks after I became a resident, I started collaborating in research projects, and this quickly transformed the way I saw things. I suddenly realised that medicine existed thanks to research. The concept that you could create new knowledge that could eventually change the lives of people was amazing. It seems so obvious but you can study medicine for years and rarely think in these terms. Within a few months I was completely decided to dedicate my professional life to research.

So I ended up as a clinical researcher in fetal medicine. I first did my PhD in Barcelona and then moved to Belgium for a few years, where I had the privilege of joining one of the groups that pioneered fetal surgery in the world. When I came back to Spain in the early 2000’s I started a fetal medicine and surgery program. Over these years, we grew from a very small group of enthusiastic young people to a renowned international research centre with more than 75 people and one of the greatest scientific output in fetal medicine. I think our main findings can be summarised in one sentence: health starts before birth. The way our brain and heart will work during our lives is largely influenced by the life conditions in our mother’s womb. Pregnancy complications like preterm birth or fetal growth restriction may affect as much as one in ten pregnancies, and these fetuses and future children will be more prone to suffer neurodevelopmental and other health problems. We are looking for ways of reducing the burden of these pregnancy complications.

We have been supported by Cerebra for the last 13 years. We first demonstrated how children born preterm or with growth retardation had more neurodevelopmental problems. We later showed that ultrasound and magnetic resonance imaging were useful to understand how these problems occurred, and could help to identify those fetuses and babies at highest risk. Some of our research findings have been incorporated to current clinical practice. For instance, most medical societies recognise that brain Doppler must be used to identify and timely deliver fetuses with late-onset growth restriction. This change in clinical practice may benefit thousands of women in the UK, and hundreds of thousands in Europe and the world. In our current Cerebra research program we are investigating interventions that could protect the fetal brain and limit the consequences of brain injury. We also hope to demonstrate how maternal well-being is related with fetal and child neurodevelopment, and how we could provide tools to foster healthy brain development in utero.

Disease is part of nature. We as humans have the privilege and the capacity of investigating disease to understand it and trying to counter its effects on individuals. It may be hard for those suffering a disease to learn that research is so expensive and that it often takes a long time to achieve results that effectively improve things in “real life”. However, when we see where we are every ten years, we realise the impact of research. We must continue on this enterprise, for us and for the future generations.

Cerebra invests large amounts in promoting research and it does that in the most effective manner. With a policy of funding ambitious research programs for long periods, Cerebra allows researchers to undertake projects with a much higher chance of leading to real improvements. I think all Cerebra members, associates and supporters must be extremely proud and reassured that they are investing their money wisely and in a way that will change the life of many people in the future.

Cerebra has been with me for a substantial part of my research career, and I am extremely grateful and honoured for that. I hope that we can still do many important things together in the future. Thank you very much”.

Dr Gratacós is Professor of Obstetrics and Gynaecology and Director of the BCNatal national and international referral centre in Maternal Fetal Medicine.

This article is the latest in a series written by our Academic Chairs:

 

Southampton Boat Show Raises Funds

Gareth receives the cheque

Gareth receives the cheque

We would like to say a big thank you to Weymouth Marina who chose to raise money for Cerebra at their annual berth holder party.

They raised a fantastic £880 in total and we sent our Corporate Development Officer Gareth Owens to pick up the cheque during the Southampton Boat Show.

If you would like to find out about how you can raise funds for Cerebra, please check out our fundraising pages.

St John’s Chambers support Cerebra

Delegates at the St John's Chambers Conference

Delegates at the St John’s Chambers Conference

On Tuesday 13th October, St John’s Chambers in Bristol held their National Conference, raising money and awareness for Cerebra.

St John’s Chambers is one of the largest barristers’ sets in the South West, with over 80 members including seven silks, specialising in all major areas of law. The conference featured speakers who are leading consultants in child brain injury and covered many hot topics relevant to practitioners working in the field of child brain injury. The programme of events can be viewed here.

Chris Jones, Cerebra’s Chief Executive, addressed the conference to outline the work that the charity does and delegates also had a chance to view a selection of items designed by the Cerebra Innovation Centre (CIC) including the ever popular iPad Case and the GoTo seat.

Cerebra is very grateful to St John’s Chambers for their support and for helping to raise the charity’s profile in this way.