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 ceciliab@cerebra.org.uk 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.’

Meet our Scottish Facilitators

One challenge that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services. We listened to this concern and have funded research to explore practical and effective ways of resolving the commonly occurring problems families face when dealing with public bodies. As a result we produced our Accessing Public Services toolkit and started running workshops alongside our toolkit.

Following on from the success of both the toolkit and accompanying workshop, the toolkit has been adapted so that it is relevant for families who have a child with a brain condition who live in Scotland. The toolkit is free to download from our website.

To help us run our Scottish toolkit workshops we are delighted to have taken on 5 parent/carers, all of whom have children with a brain condition and who have also experienced the difficulties that many families face in accessing public services.

We value their experience, skills and knowledge of disabled children and the Scottish social care system. This is our opportunity to introduce them to you.

If you are an organisation in Scotland and would like to hold one of our workshops, please get in touch with Beverley Hitchcock on beverleyh@cerebra.org.uk

Gail

My name is Gail McKeitch. Whilst born and bred in Glasgow, I now live in Aberdeenshire and have done for 30yrs. I’m married with three adult sons, two of whom have an autistic spectrum disorder. I have previously worked within HMRC, National Autistic Society, VSA Carers Centre and more recently with a private social care company. As a volunteer I facilitate an autism specific support group known as NAS Ellon Branch as well having my own autism consultancy. Yes, I like to keep busy and thrive on a challenge. Looking forward to meeting you.

Laura

I am mum to Tom who is 5, and has a range of complex medical issues including cardiac, respiratory and epilepsy.  Tom would fall into the category of a child with exceptional health care needs, so needs round the clock highly specialised medical care.  We have had some very positive experiences with accessing support, but also some extremely challenging ones.  I am currently part of the Exceptional Families project working with Kindred and the CEN clinical network to improve the services and support available for families like ours. In order to be a strong advocate for Tom, I have had to arm myself with as much information as I could, be very clear about articulating his needs, and not be afraid to have difficult and sometimes emotional conversations with professionals. I’m hoping to help other parents to do the same.

Sam

Hi, I’m Sam and I live near Auchterarder with my husband, 12 year old son, 9 year old daughter and 2 cats! I spend my time caring for my son who was initially diagnosed with Cerebral Palsy at 2, re-diagnosed with Hereditary Spastic Paraplegia at 6, being a Mum, working as a volunteer adviser with Citizien’s Advice and trying (badly) to get fit. Before kids, I spent many years working as an IT Consultant including doing lots of facilitation. I’m really looking forward to helping to run the new workshops in Scotland.

Sharron

I’m Sharron Farrell and I’m the mother of 6 children (think Old Woman who lived in a Shoe!). My eldest son has severe autism and attends a Communication Base in a Mainstream School. I have personal, voluntary, and professional experience regarding the challenges families face in order to access the services they need. I have a background in Biochemistry, Teaching, IT, and Autism.
 

Judith

Hi, my name is Judith Knox and I live in Fife with my husband and 10 year old son. My son has complex needs and I am his main advocate in ensuring he receives the support he requires to fully meet his needs. Having been employed within both the NHS and local authority Social Work Service for many years I was fortunate to have an understanding of the local landscape and systems.  This has been a great help in navigating my way through the bureaucracy. To have had access to a resource like the Cerebra Accessing Public Services Toolkit at that time would have been so helpful. My journey to access services and appropriate support for my son continues.  I am currently on a year’s career break to allow me to concentrate on accessing appropriate educational placement for my son. I am thrilled to be part of the team bringing this Toolkit to life across Scotland.

 

 

Why Our Research is Important – Cerebra Family Research Group

Centre for Educational Development, Appraisal and Research (CEDAR)
University of Warwick
Cerebra Family Research Group
“Strengthening families”

Why our research is important

One of the biggest influences on the development of all children is their family. Children with brain conditions are no different to all other children in this respect – their development is also affected by what happens within their family. The context of the family affects all children’s development in at least three ways:

  1. Parents and carers approach parenting in different ways, and how parents raise their children can affect how children develop both positively and less positively.
  2. The economic context in which families live has a big impact on children’s development. This includes poverty, parents being out of work, and factors such as the quality of the housing in which families live.
  3. Parents and other family members who are under significant stress may affect the well-being of children within the family.

Within this context, the research carried out by the team at Warwick focuses on three big issues for families of children with brain conditions, specifically children with a learning disability and/or autism:

  • Demonstrating that the same family factors that influence the development of all children affect the development of children with learning disability and/or autism. We do this by focusing on analysis of large UK national studies of thousands of children that also include some children with learning disability/autism (e.g., the Millennium Cohort Study). The Cerebra 1,000 Families Study is also designed to contribute to this area of research as we can now start to follow these families over time to generate new research findings that can be used to improve family life.
  • How can parents and other family members can be supported to maximise positive developmental outcomes for their children with learning disability and/or autism? We address this issue by developing and/or testing interventions that can give parents key skills to be more effective in their task of raising children with learning disability/autism. We also develop and/or test interventions designed to directly improve parents’ well-being.
  • Attempting to redress the balance for families of children with learning disability and/or autism. Parents and other family members of children with learning disability/autism are typically portrayed as suffering significant stress when raising their children. This is perhaps true, but misses the fact that raising a child with learning disability/autism is also a positive experience and results in many rewards for families. In our research, we explicitly study family members’ (especially parents’) positive perceptions and experiences when raising children with learning disability/autism. The Cerebra 1,000 Families Study has been designed from the start to capture positive experiences as well as the challenges of raising children with learning disability/autism.

Progress from January 2014 to December 2017

Some key indicators of progress from the Cerebra Family Research group are:

  • Recruitment of 1,013 families of children with learning disability (ages 4-16 years) into the Cerebra 1,000 Families Study.
  • We have grown the research group so that by December 2017 there are 14 team members working actively on family research.
  • From a Cerebra investment of £270,000 over six years we have attracted approximately £2.8 million by December 2017 (four years) to support additional family research.
  • Our funding initially included two full time PhD studentships from 2014-2019, and we have used that funding to part-support and attract a total of 10 PhD students – contributing significantly to the size of the future family research community in the UK.
  • We have published 28 scientific research papers, and at least a further 17 outputs disseminating information about family research to family members.
  • We have given 63 conference and other presentations on family research, at least 19 of which were to audiences of family members.
  • We have developed active partnerships on family research with at least 22 UK and international Universities, and have provided training and internships for seven researchers (in addition to our PhD students).
Longer term impact of the Group’s research for families

Our research team’s work is always designed from the start to achieve longer term impact for families. We work with parents and external partners to use the findings from our research to influence policy and practice, and we use our research findings to develop interventions to directly support family members (especially parents). By December 2017, the following illustrate the impact of our research for families:

  • We have partnered with at least 21 non-government and government organisations in the UK and internationally to carry out and use family research. Notable successes include: the use of our family research findings in two NICE guidelines and influencing a further NICE Quality Standard, several reports and guidelines produced as a part of the Transforming Care Policy Programme, and influencing (with Mencap) the Public Health Agency in Northern Ireland to include children with learning disability and their families in their early intervention policy.
  • Our research group has pioneered the development and testing of mindfulness-based interventions to improve well-being for parents of children and adults with learning disability and/or autism. New research funding (from the Baily Thomas Charitable Fund) will test in a Randomised Controlled Trial design whether online mindfulness intervention can help to improve parents’ well-being.
  • We have also tested an early intervention to increase the skills of parents of children with autism (funded by Autistica), and have a new project to test an early intervention for families of children with learning disability (Early Positive Approaches to Support, developed by a team that included Professor Hastings, and funded by the National Institute for Health Research Public Health Research Programme)
  • Working with Cerebra (and Mencap and the Challenging Behaviour Foundation) and with parents, Dr Totsika from the Warwick team is currently developing a booklet translating our research findings into practical advice for families (funded by the Economic and Social Research Council).

You can find out more information about the team at Warwick and watch a video about their research here.

New look library lists

Take a look at our great new Library Lists. We’ve made some changes to make them more user friendly. We hope these changes will help you find the things you are interested in. The Library Book List and the Children’s Book List are ready now on our library page.

We have added more subject areas so you don’t have to look through long lists of book titles. Popular topics like sensory processing disorder and growing up now have their own sections. The Children’s Books List now have the books listed by subject area instead of by age group. So you can now find all the books for children on ‘behaviour’ or ‘feelings’ or ‘for siblings’ together.

If you are already a library member, why not take a look and let us know what you think. If you haven’t joined the library yet, why not take a look to see what we’ve got.

We are in the process of updating our Sensory Toy List which will have new write ups and information about the toys with pictures taken of the sensory toys here at Cerebra HQ. It will be available soon but in the meantime we have a temporary Sensory Toy List which includes all the great new and replacement toys purchased with the money we received from Children in Need.