Dr Ross Head to talk at Naidex

Naidex is Europe’s largest disability and independent living event and will take place at the NEC on 25th and 26th April.

We are delighted that Dr Ross Head from our Innovation Centre (CIC) has been asked to speak at such a high profile event. His seminar will take the form of a case study review of three CIC products: a seated tandem surfboard; triathlon equipment which enables a young girl to participate with her father;  a horse riding helmet for a young man with unique head shape. He will also be giving an overview of some the great products his team design and make.

The event is completely free to attend and you can find out more and book your place here.

You can also follow the event on social media #WeAreAble.

Ross graduated in Product Design BSc with first class honours in 2001, and subsequently a PhD in Digital Design Methodology and Glass Product Design at Swansea Metropolitan University. He then became one f the founding members of staff for Cerebra Innovation Centre, whilst lecturing part time within FADE.

Dr Head has expertise in all areas of Product Design, specifically but not limited to design for children with additional needs including R&D, ergonomic studies for children with differing postural and dimensional needs, CAD, field testing, prototyping and manufacture.

He also liaises with industry partners to secure licensing agreements and develop manufactured products.

Furthermore, Dr Head was involved as Company Supervisor for a PhD scholar under the KESS scheme. This revolved around data capture for product concept design for children with additional needs.

Accredited workshops on Accessing Public Services, DLA and Sleep

Guide to claiming disability living allowanceWe are delighted to announce that our workshops on Accessing Public Services, DLA and Sleep 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.

Our research has shown that families can experience difficulties accessing public services, completing the Disability Living Allowance (DLA) forms and with their children getting a good night’s sleep. Our workshops aim to give families the knowledge, skills and confidence they need to tackle these issues.

Accessing Public Services

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This workshop can support you by unpicking potential problems and give you the tools you need to resolve them. The workshop will help you get the best out of our Accessing Public Services Toolkit.

DLA

This workshop will help you to use our DLA Guide to complete the DLA claim form. It also looks at the common problem areas, busts some of the myths around DLA and gets you to assess whether you’re getting the correct rate of DLA for your child (if you already claim it). If you’re not, we’ll talk about how to go about challenging the decision. The workshop also takes a brief look at related benefits.

Sleep

We will help you to understand and support your child’s sleep. The workshop looks at why sleep is so important, what can affect it and strategies to improve problems such as settling, night waking, early rising and sleeping alone. The workshop supports the advice given in our Sleep Guide and by the end of the workshop you should feel more confident to tackle your child’s sleep problem.

If you would like to host one of these workshops please call us on our Freephone number 0800 3281159.

Sensory toys for young children in our library

We have recently added a selection of toys suitable for the under 3s to our postal lending library.

Nursery Toy Kits

We now have three sets of nursery kits suitable for children aged 3-12 months, 12-24 months or 24-36 months. Each kit contains a range of colourful, stimulating toys for the under 3s for exploration, play and early education.

3 – 12 months

12 – 24 months

24 – 36 months

They may include battery operated items.

Bamba First Comforts – the first word in baby signing at home

We also have a new item in the Sensory Toy Library, a ‘Bamba First Comforts’ baby signing kit, kindly donated to us from a shop in Carmarthen, ‘Croeso Cynnes’.

The kit comes with a book, a dvd and a box of toys to teach the concepts of communication through play.

If you are interested in borrowing any of these items or have any queries about our library please email the Librarian at [email protected]

Full details about our library service can be found on the library page of our website https://www.cerebra.org.uk/help-and-information/library/

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.

#neurosurvey

 

 

Fetal Medicine Barcelona – University of Barcelona

Why our research is important for families?

We are a research group focused on Fetal Medicine. Our main goal over the last 15 years has been to understand, identify and prevent brain injury during fetal life.

One in ten children will suffer neurodevelopmental delays and learning disabilities. In about two thirds of these, brain injury occurred before birth. Early detection and intervention during pregnancy or the first years after birth offers a unique opportunity for correcting or improving the consequences of brain injury.

Prenatal life is a critical moment that strongly determines future health. The brain is the most clear example of this. Even small changes in the delicate environment of the mother’s womb can substantially deviate the normal development of the brain. In many instances, brain injury is subtle and it goes unnoticed during pregnancy and first years of life. However, these periods offer a critical “window of opportunity” for detecting and preventing neurodevelopmental problems that will appear later in life, when interventions may be much less effective.

Our pioneer research aims at reducing the impact of fetal problems in neurodevelopment. We have contributed substantially to current knowledge on fetal brain injury. We showed that even mild adverse exposures can have very important effects in the fetal brain that will persist until childhood. For instance, thanks to the support of Cerebra we demonstrated how intrauterine growth restriction, a common prenatal problem traditionally considered “benign”, is strongly associated with impaired neurodevelopment in the child. We also developed new diagnostic tools to detect abnormal brain development in the fetus and newborn.

As a natural evolution of our research, we are now testing in clinical trials new interventions to protect the fetal brain. Some studies evaluate how public health measures in large populations can improve brain development, while others are focused on reducing the consequences of brain injury. We are convinced that our research can change the quality of life of thousands of children and their families, from the mildest to the most severe forms of brain injury.

We strongly believe in the future of the so-called “P4 medicine” (predictive, preventive, personalised and participatory). Thus, all our current and future research projects are focused in developing new and innovative strategies for the prediction of brain risk, through personalised tools with a better information and participation of the families, which then lead to effective preventive interventions. Fetal life is a paradigm of P4 medicine, a unique opportunity to protect the quality of life of our future children, and of our society as a whole.

 

Progress from January 2014 to December 2017

  1. We have improved the understanding of how common pregnancy complications (including fetal growth restriction, prematurity and exposure to tobacco or alcohol) are associated with fetal brain development. This has allowed to better understand why some babies are at higher risk of developing brain problems, and identify targets for treatment.
  2. We have developed indicators (biomarkers) of brain injury, which can be detected in imaging techniques from the earliest stages of life. These biomarkers are based on techniques such as ultrasound or magnetic resonance imaging.
  3. We started clinical trials aiming at preventing fetal brain problems: (1) evaluating the best timing for delivery in high risk pregnancies (RATIO37) and (2) improving neurodevelopment by acting on maternal diet and stress conditions (IMPACT). New clinical trials will test treatment that showed impressive results in protecting brain development experimentally.
  4. We have raised awareness on the importance of fetal life:
  • Among healthcare providers through scientific publications, presentations in international congresses, our website, courses, and new medical guidelines.
  • Among the society through our social website http://inatal.org, a mobile app (translated to English soon) to promote a healthier pregnancy and several social actions in collaboration with Cerebra.

Some key indicators of progress are:

  • We have recruited more than 1,200 mothers and fetuses for various research projects.
  • We have published 151 international research papers related with the Cerebra projects.
  • We have delivered 163 invited lectures and 37 chaired speeches, aside from 97 oral communications and 102 posters, at international conferences and seminars.
  • The funding requested initially included the equivalent amount to fund three PhD studentships from 2014-2019, and we have used that funding to partially support and attract a total of 20 PhD students that joined the Erasmus Mundus European Joint Doctorate in Fetal and Perinatal Medicine, coordinated by our group.
  • We have developed partnerships with 11 international and 12 national research groups.
  • Most international clinical guidelines now recognize the importance of “late-onset” growth restriction. The condition was regarded a benign form of IUGR until a few years ago.
  • On the top of Cerebra’s funding of £478,122 from 2014 to 2017, we have raised an extra £870,400 by December 2017 (four years) to support the Cerebra research project.

 

Longer term impact of our research for families

Our research team’s main goal is the prevention of brain conditions from the earliest stages of life to achieve a longer term impact for families. We started working towards this aim with the first research Cerebra programme (2008-2013) where we focused on understanding and development of diagnostic tools. In the second research programme (2014-2019) we have started testing therapies that emerged from the earlier research programme.

Over future years, we will finalise ongoing large studies and start new ones to generate advances that will be applicable to real practice. These tools span from public health approaches to more sophisticated treatments. For instance, the IMPACT trial will generate new tools for empowering parents to apply lifestyle measures with an enormous impact on the quality of life of the future child. In a new trial to start in 2018, we will test prenatal treatments that could substantially reduce brain injury associated with intrauterine growth restriction.

Likewise, among our future research projects, we will expand our advances to other fetal diseases leading to neurological damage, including prematurity, malformations such as spina bifida and cardiac defects, exposure to alcohol/tobacco and environmental exposures.

We believe the impact of our research is important for families. Biomarkers, preventive strategies and personalised treatments will be effective in other serious problems and even genetic diseases. We are now only discovering how brain development may change among individuals with the same “disease name”. For instance, in a new project we are identifying markers of intellectual development prognosis among children with spina bifida, and this will be critical to personalise their therapy. All brain problems, no matter how severe they are, will strongly benefit from a better prediction and prevention, an optimal environment and early and personalised stimulation. All these strategies must definitely start before birth and continue the first months of life.

You can find out more about the research that is taking place at the University of Barcelona here.

Students Raise Funds With Performance

A group of second year BA Acting students at the University of Wales Trinity Saint David recently held a week of fundraising activities to raise money for us.

The group held a number of fundraising activities over the course of a week including bake sales and a raffle but the main event was a performance which included singing and acting – and plenty of fun!

Our Events Coordinator Cecilia Bufton, who attended the event said: “It was a lovely night of singing and acting and I was glad I could come along and enjoy it!”

The event raised an incredible £429.61 for Cerebra and we would like to say a huge thank you to everyone who was involved in making the evening such a success!

If you would like to find out how you can get involved with fundraising contact Cecilia at [email protected] or call 01267242586.

Here’s a video of one of their performances:

Ollie’s Story

Ollie with his mum and brother

Ollie with his mum and brother

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

Ollie Taylor was born a fighter. Diagnosed with Wolf Hirschhorn Syndrome at birth, a rare neurological condition that affects just one in 80,000 people, doctors warned his parents he was unlikely see his third birthday. But, now nine, Ollie from Penylan in Cardiff continues to defy all odds.

Ollie’s condition means he was born with no muscle control and limited strength. He has experienced seizures, delayed growth and learning difficulties.

The first three years were particularly difficult for Ollie and his family. As he was unable to swallow or support the weight of his own arms and head, he required around-the-clock care from his mum, 49-year-old Cardiff Metropolitan University lecturer Sian Taylor, with the support of medical professionals.

‘As soon as Ollie was born it was a fight for his survival,’ Sian says. ‘At times our family feared the worst. It was devastating.’

But when Ollie was three, his condition became less life-threatening and Sian began searching for brain injury and neurological support groups. She was keen to focus on her son’s cognitive development. It was then she contacted Cerebra.

‘As an academic, I was really impressed with the evidence-based research at Cerebra and felt compelled to seek their help,’ she says. ‘I’m glad I did, as they offered me a grant to cover the cost of innovative physical therapy treatment that isn’t available on the NHS and that I would have not been able to afford myself. We take him for the sessions three times a year in Oxfordshire and the outcome has been better than we could ever imagine.’

Ollie is now able to sit upright and walk with an adapted frame. Sian hopes that, one day, Ollie will be able to walk unaided. She has been so impressed by the work of Cerebra that she has become an ambassador for the charity.

‘The work of the Innovation Centre is fantastic,’ Sian continues. ‘They designed a larger version of a toddler’s ‘jumparoo’ that he was able to test, and also provided a walking frame that allows him to get around the house.’

Cerebra has also introduced Ollie and his family to others going through similar experiences.

‘I think what makes Cerebra so unique is how it has created a community for parents and carers who, like me, felt isolated before. I feel inspired to do my own research and find myself often speaking with the charity’s team and signposting them to things I’ve found online. It’s a two-way process that I hope will help others who find themselves in our situation.

‘I was so pleased to hear that Specsavers has pledged its support to Cerebra. Not only will this help raise vital funds that are needed, but also awareness of the charity so it can help even more families in need of support, like ours has been.’

You can find out more about our Specsavers partnership here.

Imogen’s Story

Imogen with mum Catherine

Imogen with mum Catherine

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

Imogen Ashwell-Lewis, from Caldicot, was diagnosed with Cerebral Palsy at birth. The condition severely limits movement in the six-year-old’s lower body. As Imogen turned two, her mum, Catherine, sought additional support to ensure her daughter had the best opportunity to develop, both physically and socially.

She came across the Cerebra Innovation Centre in Swansea, which creates bespoke products for children with neurological conditions, and immediately got in touch.

‘The team at the Innovation Centre were great,’ she says. ‘We discussed Imogen’s condition and her need for something that could help her movement. They were very accommodating and immediately started working on an adapted wheelchair to help her get around our home and, as she grew up, out in the garden and further afield.’

As Imogen got older, she returned to the Innovation Centre to have a larger wheelchair created. The team at Cerebra have also designed a bespoke seat, which Catherine can now easily fit to trolleys when she is shopping or in her car, so Imogen remains comfortable while away from their home.

‘Imogen has a really close relationship with the design team, who often invite us along so she can test new products they are developing,’ Catherine says. ‘It’s great to see a group of people committed to improving the lives of children like Imogen.

‘The fact that a name as recognised as Specsavers has pledged its support not only means additional vital funds for the charity and the Innovation Centre, but also much needed awareness about what they can do.

‘Day-to-day life would have been so much more difficult without the adaptations Cerebra designed for us. Before she had the wheelchair her movement was extremely limited, which in turn affected her cognitive development and ability to speak and play with other children. This couldn’t be further from the truth now – she’s a smart and social six-year-old who has been given the opportunity to do everything a child her age should be able to do.

‘If it wasn’t for Cerebra this would have never happened.’

You can find out more about our Specsavers partnership here.

Ryan’s story

Ryan and Taran Hooper at our Specsavers partnership launch event

Ryan and Taran Hooper at our Specsavers partnership launch event

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

For six-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered UK charity Cerebra.

Ryan, from Kidwelly, has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family.

When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

‘Cerebra’s sleep service was invaluable to us,’ she says. ‘Whenever I would call they’d answer my questions and reassure me I could cope.

‘The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life.’

Vanessa is keen to promote awareness, and reduce the stigma, of Down’s syndrome and other brain conditions. As part of a larger group, Vanessa even climbed Pen y Fan at night to raise awareness and funds for the charity, and has since become an ambassador for Cerebra.

‘It’s thanks to businesses such as Specsavers, in addition to others that help raise funds and awareness, that Cerebra is able to help so many families like it has mine,’ she says. ‘It’s hard to think what life would be like had we not received the support from Cerebra, it would be a lot more hectic to say the least.

‘I’m proactive in raising awareness about Cerebra and its services, as well as awareness about brain conditions like Ryan’s. I want to remind the world that Ryan isn’t a lovely little boy with Down’s syndrome, he’s just a lovely little boy.’

You can find out more about our Specsavers partnership here.

Specsavers Name Cerebra as their Charity of the Year for Wales

Imogen

Specsavers has donated £10,000 to Cerebra to mark the start of a year-long fundraising partnership.

The optician’s 39 stores across south and mid Wales are joining forces to raise additional funds for Cerebra’s support services and research work, with plans afoot for fancy dress days and a 220-mile cycle-thon.

The donation was presented to our chief executive, Chris Jones, on 15 February when Specsavers staff from across the region visited Cerebra’s Innovation Centre in Swansea. During the visit, staff saw products the team have designed to make life easier, more inclusive and fun for children with brain conditions and also met with three families we support to see first-hand how its services are positively impacting on families in Wales and the rest of the UK. You can read their stories here:

A spokesperson from Specsavers said: ‘Cerebra is a remarkable charity that does incredible work to improve the lives of children with brain conditions, which we saw first-hand at the launch of this partnership.

‘The advice and information it provides to families goes far beyond leaflet sharing, with the charity giving practical help and guidance to families to help them get the financial and social support they need. It empowers families with the information they need to make their own decisions and solve any problems and issues they face.

‘We’re always striving to support organisations making a positive impact on our community and Cerebra is doing just that. We always enjoy raising money for charity and can’t wait to build on that initial £10,000 donation with our neighbouring Specsavers stores”.

Chris Jones, chief executive of Cerebra, says: ‘Families where a child has a brain condition face challenges every day – just to learn, play, make friends, enjoy and experience the world can be difficult, even impossible. But we don’t believe there is any challenge that can’t be overcome, and we are dedicated to helping families discover a better life together. We are very grateful to Specsavers for their generous support and are excited that they joining us on this rewarding journey to work wonders for children with brain conditions.’