Author Archives: Elaine Collins

Summer Raffle 2015 – winning tickets drawn

Ryan draws the winning tickets

Ryan draws the winning tickets

On 31st July we drew the lucky winning tickets in our 2015 Summer Raffle draw.

The draw was made by a very special guest – four year old Ryan Hooper, who has Down’s Syndrome. Ryan and his family (mum and dad Vanessa and Simon Hooper and brothers Aiden, Dylan and Taran) recently enjoyed a well earned break at the charity’s holiday home in Pembrokeshire.

Many families with children who have special needs find it incredibly difficult to find a place to go on holiday that caters for their needs. Cerebra’s holiday home, Vallecchia, gives families an opportunity to enjoy a break without some of the difficulties they might experience on a standard holiday. There is a ramped entrance to allow wheelchair access and a large bedroom with en-suite facilities on the ground floor. It also has a multi-sensory room and a soft play area with tactile sensory toys. There is a large garden and a games room in the detached double garage, with table tennis, table football and a pool table.

Ryan’s mum Vanessa said “The holiday was amazing. It was a chance for all of us to spend time together as a family and to get away from the hassle of everyday life. There was plenty of space for all of us and it provided everything we needed. That time together was priceless”.

The Hooper family with Sir E Bear

The Hooper family with Sir E Bear

Ryan loved helping us out with the draw – and thoroughly enjoyed meeting Cerebra mascot Sir E Bear! Our thanks to the family for helping us out.

The raffle draw is an easy way to support the charity, with the chance of winning a great prize. Tickets for Cerebra’s Christmas Raffle will be on sale soon. To get your tickets please contact us on 01267 244221 or email louised@cerebra.org.uk.

 

 

Cerebra Week 2015

Cara Readle with the Cerebra Fundraising Team

Cerebra Fundraising Team

Cerebra will be holding its annual awareness week in Carmarthen town centre from 27th July to 1st August.

This year a team from the charity will be in Merlin’s Walk from 10am to 4pm each day and there’ll be lots of fun activities, games and competitions to keep the children, and the whole family, entertained. There will also be the chance to meet Sir E Bear, the charity’s giant teddy bear mascot!

Anyone who stops at the Cerebra stand and has a go at one of the games will have the chance to be entered into a free prize draw to win family tickets to local attractions such as Folly Farm, the Gwili Railway, Dinosaur Park and Manor House Wildlife Park.

Allyson Silverthorne, Community Fundraiser at Cerebra, said “Our Cerebra week in Carmarthen is one of the highlights of our year – it’s always a lot of fun and it’s so lovely to have the chance to chat to people about the charity’s work. If you’re in the area please stop and say hello”.

The charity is very grateful to the management and shops at Merlin’s Walk and to the local tourist attractions for their support.

Alissa completes her 10k challenge

Proudly showing her off her medal

Proudly showing her off her medal

We are delighted to let you know that on 12th July Alissa Elsaesser successfully ran the British London 10K in aid of Cerebra.

Alissa was an absolute star on the day and loved the cheers and support from the crowd. She even achieved her ambition of crossing the finishing line ahead of her dad, Alex.

Alissa running in the London 10k

Alissa in action

Alissa was born with Down’s Syndrome but that has never held her back and she is always eager to help those in need. This is one of the reasons that she has decided to take on this challenge; to help children with neurological conditions across the country.

Her fundraising total is steadily climbing and she has now managed to raise well over £3,000! If you would like to donate you can do so by calling 01267 244221 to make a donation over the phone, or through her Just Giving page.

Alissa would like to thank everyone for their support and donations and for their kind messages of encouragement.

The PenCRU Annual Report is out now

PenCRU

PenCRU

Professor Stuart Logan from the Peninsular Cerebra Research Unit reflects on the progress made in 2014 towards improving the health and wellbeing of disabled children and their families.

The Peninsular Cerebra Research Unit is based at the University of Exeter. The team carry out a broad programme of applied research that aims to improve the health and wellbeing of disabled children and their families. Their research is funded by Cerebra.

Professor Stuart Logan, the Cerebra Chair in Paediatric Epidemiology, reflects on progress made in 2014:

“This year saw our 5th birthday, and further progress in establishing our reputation for involving families as partners in the research process. Meaningful partnership with families in research is what PenCRU is all about and underpins all we do – doing research ‘with’ families, not ‘on’ them, ‘to’ them or ‘for’ them.

For me, the most moving experience of the year was hearing some of the parents who have worked with us talk about their experiences during the annual visit to PenCRU in Exeter by Cerebra staff. Parents described the challenges they face in many aspects of their roles as carers and in dealing with services, and contrasted this with the positivity they experience acting as experts in the research process. Some of these thoughts were captured in the video Cerebra made about our work. For all the staff of PenCRU it is these relationships which make our work feel worthwhile.

On a national level, we completed the project to identify research priorities about treatments and therapies for children and young people with neurodisability. This collaborative research received keen attention from the National Institute for Health Research (NIHR) and we hope will influence the research they commission in future. Do look up the Top 10 priorities, and if you are a researcher then please think about how we can address these issues. These are the issues that young people, parents and clinicians agreed were most important to address to provide essential information to inform decisions.

PenCRU’s project highlights this year included the culmination of our study evaluating one-to-one peer support for parents of disabled children, focusing on the Face2Face services in Devon and Cornwall. A striking finding that emerged from this research was the sense of community resilience that Face2Face creates, over and above the benefits for those who use the service in times of need. We were also able to unpack essential components of the service that foster the sense of ‘shared social identify’ necessary for effective peer support.

With funding from NIHR, we were able to work with families and professionals to identify key health outcomes for children and young people with neurodisability. This work has taken on particular importance because of the policy emphasis on improving outcomes for children and young people. The study suggests several specific aspects of health that can be targeted and outcomes that could be measured. The full report was published by the NIHR Library and there are several papers that describe parts of the study in more detail. The work has also been presented at several national meetings and an international conference.

It’s fabulous to see how much influence the work we do at PenCRU has, both in terms of the positive impact on families who work with us and the interest in the research findings we produce. I look forward to building on our successes from the first 5 years over the next period in close collaboration with families, and of course Cerebra who provide the core funding that make this work”.

Professor Stuart Logan, Cerebra Chair in Paediatric Epidemiology

You can view the PenCRU Annual Report here.

Ugly Sisters Draw Raffle

Cinderella panto cast

The cast of Cinderella help us draw our raffle winners

Cinderella and her Ugly Sisters helped us draw our winning Christmas Raffle tickets this year.

We recently held our  2014 Christmas Raffle draw at the Lyric Theatre in Carmarthen with the help of some special friends.

Charity mascot Sir E Bear joined some of the cast of Cinderella to draw the winning tickets, with the top prize winner receiving £5000.

Cerebra is a national charity for children with neurological conditions, helping them and their families through a combination of direct, ongoing support and funding vital research. The charity receives no government funding, relying entirely on the support of the public.

The raffle draw is an easy way to support the charity, with the chance of winning a great prize. If you would like tickets for the Summer 2015 Raffle contact us on 01267 242554 or louised@cerebra.org.uk.

Our thanks go to the Mark Jermin Theatre Company for their help with the photo shoot.

Dorchester Halifax Branch Cycles to Raise Money

Charlie Lawson and the Halifax Dorchester team

Charlie Lawson and the Halifax Dorchester team

Charlie Lawson has completed a cyclathon to raise money for Cerebra.

On Friday 28th November Charlie Lawson from the Dorchester branch of the Halifax completed a sponsored cycle to raise funds for Cerebra. Although he be cycled from 9am to 5pm he didn’t cover a great distance as the ride took place on a stationary exercise cycle in the branch’s reception area.

Charlie raised funds for Cerebra in support of his colleague Chris Bennett, who is an Ambassador for us. Chris became involved with the charity after his son Elliott was born with Cerebral Palsy: “Myself and my wife Hannah are proud parents to Elliott. He was born 8 weeks prematurely and diagnosed with cerebral palsy at 8 months old. I found it very hard to come to terms with Elliott’s diagnosis but he is working so hard and making his own special journey in life. Cerebra have been very supportive to us and I am very proud to be a part of such an amazing charity.”

The local community got behind Charlie and he was visited by Cerebra Regional Officer Lilly Fahey and even the town crier!

So far, a fantastic £758.26 has been raised as a result of the event so Cerebra would like to say a huge thank you to everyone who helped.

News – July 2014

Stack of newspapers

Stack of newspapers

A round up of recent news, guidance and legislation.

Teenagers with complex health needs lack support as they approach adulthood
The Care Quality Commission have reviewed the way teenagers with complex health needs are supported in their transition to adult health services, and aim to improve the process. They invite service users to share their experiences.

Delivering better oral health: an evidence-based toolkit for prevention
Delivering Better Oral Health is an evidence based toolkit to support dental teams in improving their patient’s oral and general health. (Public Health England).

Update to charging arrangements for adult social care services
Updated guidance for local authorities on charging for adult social care services, (Department of Health, England).

Learner Travel (Wales) Measure 2008
New guidance on school travel for Wales, (Welsh Government).

New NICE guidance: MTG18
The MAGEC system for spinal lengthening in children with scoliosis.

Standards for school food in England
Departmental advice on the standards for planning and providing food in schools.

National plans or strategies for rare diseases
The EU (European Union) publish updates on member countries’ national plans or strategies for rare diseases. The most recent one was launched in Dublin, Ireland on 3 July.

New legislation

2014 No. 192, The Registration of Social Workers and Social Service Workers in Care Services (Scotland) Amendment Regulations 2014, from 30 June 2014. Extends registration requirements to certain supervisors in care at home services and housing support services.

2014 No. 1661 (C. 69), The Welfare Reform Act 2012 (Commencement No. 9, 11, 13, 14, 16 and 17 and Transitional and Transitory Provisions (Amendment)) Order 2014, from 30 June onwards. Brings into force more of the provisions for Universal Credit and other benefits. Also amends a number of conditions relating to claiming benefits such as ESA and JSA.

But…

A note about the Welfare Reform Act
Regulations and statutory arrangements related to this Act are gradually coming into place, some of them at different speeds around the country. If you need to check what the benefits situation is in your own region and under your circumstances, it is complex to trace where things are up to.

Rather than updating the information here with every piece of supplementary legislation relating to this Act in every location (since the Act was passed in 2012, over 200 further pieces of legislation have affected it), local welfare rights services can provide useful information on the practical outcome of the legislation. An example is Newcastle’s website, which keeps track of changes that may affect entitlements.

It is also possible to check what currently applies to you using the Turn2Us website, or finding information about benefits at Direct.gov, and/or if necessary, phoning a charity with a specialist welfare helpline (e.g. the Contact a Family personalised benefits service) or attending a Citizens Advice or similar office locally.

Those who do not check now and again may find they have lost out on some benefits, or might be overpaid due to changes they were unaware of, causing difficulties when money is requested back from them (for example, this is happening to some people over Tax Credits at the moment).

Note: from this summer, couples in some parts of the UK can make a joint claim online for Universal Credit. “Your claim journey” is a general guide to claiming Universal Credit.

2014 No. 1562, The Legal Aid, Sentencing and Punishment of Offenders Act 2012 (Community Care) Regulations 2014 (England and Wales). From 7 July 2014, makes Community Care matters eligible for Legal Aid, where they are connected with clinical commissioning groups.

2014 No. 170, The Pharmaceutical Services (Amendment) Regulations (Northern Ireland) 2014. Widens the range of people able to prescribe drugs and appliances to a: “doctor, a dentist, a chiropodist or podiatrist independent prescriber, an independent nurse prescriber, an optometrist independent prescriber, a pharmacist independent prescriber, a physiotherapist independent prescriber or a supplementary prescriber”, and defines who those are. From 18 July 2014.

2014 No. 1563, The Adoption Support Services (Amendment) Regulations 2014; 2014 No. 1556, The Adoption and Care Planning (Miscellaneous Amendments) Regulations 2014; and 2014 No. 1492, The Adoption and Children Act Register Regulations 2014, all from 25 July 2014, put in place various regulations about adoption in England, registers and the provision of local information.

2014 No. 180, The Bus and Coach Passengers Rights and Obligations (Designation and Enforcement) Regulations (Northern Ireland) 2014, from 25 July 2014. These regulations concern the rights of passengers under (EU) No. 181/2011(c), 16 February 2011. They designate the Dept of the Environment as the regulator, and set exemption periods for transport providers and the training of drivers in relation to passengers with disabilities, lasting until 28 February 2017 and 28 February 2018.

2014 No. 165 (C. 12), The Children and Young People (Scotland) Act 2014 (Commencement No. 2, Transitional and Transitory Provisions) Order 2014. Brings into force various sections of the Act from 1 August 2014, relating to proposals for school closures.

2014 No. 196, The Provision of Early Learning and Childcare (Specified Children) (Scotland) Order 2014, partly in force from 1 August 2014 and partly from 31 October 2014. Obliges education authorities to make a mandatory amount of early learning and childcare available for each eligible pre-school child in their areas. For most children, this applies from the first term after their 3rd birthday, though those who are 3 before the beginning of September 2014 can start at the beginning of the Autumn term. Some become eligible in the term following their 2nd birthday, in a similar way. Some children may cease to be eligible if their parents choose to defer their start date at school.

2014 No. 1652, The Special Educational Needs (Personal Budgets) Regulations 2014, from 1 September 2014. Sets out terms and conditions for receiving Personal Budgets and Direct Payments for children with an EHC (Education, Health and Care) Plan under Part 3 of the Children and Families Act 2014 (England). The Explanatory Notes athttp://www.legislation.gov.uk/uksi/2014/1652/note/made provide a useful summary.

2014 No. 1603, The Requirements for School Food Regulations 2014. New nutritional standards for food and drink provided at maintained schools and pupil referral units in England, from 1 January 2015.

2014 No. 1705, The Local Authority (Duty to Secure Early Years Provision Free of Charge) (Amendment) Regulations 2014, from 1 September 2014 (England). Adjustments to the previous legislation to take account of the Children and Families Act 2014.

2014 No. 1714 (C.73), The Care Act 2013 (Commencement No.1) Order 2014 (England). Begins to bring into force provisions of the Care Act, on 7 July, 15 July and 1 October. More Commencement Orders will follow.

2014 No. 1766, The Further and Higher Education (Student Support)(Amendment) Regulations 2014, from 1 August 2014 (England). Adjusts which courses are eligible for further education loans and the income regulations in connection with these, as well as how many times students may remain eligible to repeat if they have not completed a course.

 

Seren’s our Christmas Star!

Seren lamb main

Seren and her lamb

Christmas is a special time for families. Please give a special gift this Christmas to so that we can continue to help children like Seren.

Christmas is a special time for families and this year we’d like to ask you to give a gift of just £5 so that we can continue to support children like Seren.

Seren is a typical girly girl and likes pink things, singing, school and bossing her older brother about! Seren also suffers from uncontrolled epilepsy. At its worst, she was suffering between three and eight large seizures and up to a hundred small seizures every day.

Earlier this year, Seren endured two major brain surgeries at Great Ormond Street Hospital to remove part of her brain.

Despite the hardship she faced, she continued to smile and joke through months of intensive physio and occupational therapy and just five days after returning home she was out on the family farm helping to feed the lambs.

Cerebra has been there for Seren and her family giving practical and emotional help every step of the way. Our strength is our ability to give wide ranging support to meet each family’s individual needs making a positive difference to children’s lives.

Seren quote

 

You can meet Seren and her family in this video

There are around 500,000 children like Seren living with a neurological condition in the UK. This year we have helped 27,000 families. Please help us to be there for every child who needs our support.

Please give a special gift this Christmas and donate just £5 today. Every donation will help us to make a difference to the lives of so many brave children just like Seren.

Towards a real impact on prenatal brain damage

Brain tractography

Brain tractography

We take a look at the pioneering work of the Cerebra Foetal Research Project at the University of Barcelona.

The human brain undergoes a long phase of development that starts in foetal life and ends much later in life. The most critical steps take place in the mother’s womb and during the first two years of life. Millions of neurons are being generated every day and start establishing connections, determining how our brain is going to work for the rest of our lives. This extremely complex process is governed by information contained in our genes, but also by the environment. Any disturbance may have a critical influence in the delicate sequence of events regulated in the genetic blueprint.

One in ten children has neurodevelopmental problems. It is estimated that about two thirds of these are of prenatal origin and in most instances, the problem occurred during foetal life, long before labour started. Severe forms of brain damage affect about 2/1000 of all new-borns and are expressed by serious complications including cerebral palsy and/or intellectual disability.

The vast majority of brain problems however, are manifested as subtle developmental disturbances. These cases are not associated with overt brain injury, but with brain reorganisation and are expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory. The impact of these ‘milder’ neurological alterations in the quality of life cannot be overemphasized. Because they are of milder nature, they mostly go unnoticed in early months and even years of life.

Identification

Identification of foetal brain injury/reorganisation as early as possible is a major opportunity for public health. The problem involves thousands of families yearly. For the first two years of life, the growing brain has enough plasticity (the brain’s ability to respond and remodel itself) to bring back to normal deviations that occurred during intrauterine life. This has been defined as the ‘window of opportunity’ to revert the effects of in utero diseases on foetal programming.

Unfortunately, early diagnosis is still not possible in a substantial majority of cases. Much is still unknown about how a developing foetal brain adapts to and eventually deteriorates under adverse conditions. We need to improve the understanding and current diagnostic means of perinatal brain injury if we hope to start early interventions.

The list of foetal problems potentially leading to brain injury is large, but the majority of cases are caused by prematurity and intrauterine growth restriction (IUGR). Over the last 10 years the team in Barcelona has worked on both, but have focused more on IUGR as there was much less known about this disease and the opportunities for public health were greater.

Intrauterine Growth Restriction & Prematurity

IUGR is normally the consequence of placental insufficiency. The placenta is the organ that the foetus uses to obtain nutrients and oxygen from the mother. In a proportion of pregnancies, for a variety of reasons, the placenta does not grow properly and is not able to satisfy the enormous requirements of the foetus. In these circumstances, the ‘genetic program’ can not build the brain in the way it was supposed to, so that reprogramming, and consequently reorganization, must occur.

In prematurity, which is typically characterised by intrauterine infection, the baby is exposed to the ‘outer world’ when its brain is still in the critical construction phase. Changes in temperature, feeding, sound and light have, as of yet, unknown effects on the developing brain.

Cerebra Foetal Research Programme

The Cerebra Foetal Research Programme incorporates a variety of projects that aim to diagnose abnormal brain development in foetuses and new-borns, and implement specific interventions to prevent, or reduce its impact. The main interrelated research lines cover problems of maternal, foetal and neonatal health, and are summarised below.

Brain Connectivity

The main objective of this research line is to develop a quantitative imaging biomarker for early diagnosis of neurodevelopmental disorders based on the imaging of the brain connectivity (the way neurons connect the different brain areas). To accomplish that, different techniques of Magnetic Resonance Imaging (MRI) are being used, including diffusion, functional and anatomical MRI.

Neurological Programming (Microstructure and Metabolomics)

In this research line, the group focuses on identifying the structural (the way neurons and other cells are organised within the brain microscopically) and metabolic differences in the brain of foetuses and children that are diagnosed with growth restriction and are at risk of developing neurodevelopmental problems. This requires the development of new mathematical algorithms that will allow the interpretation of subtle brain changes that could be used as new biomarkers.

Diagnosis and Therapy in IUGR

This line of research aims to identify before birth, which babies with growth problems will have abnormal neurodevelopment. The majority of babies considered small in utero are naturally smaller and will face no future problems. However, a proportion of babies are born small due to problems with the placenta. These babies face neurobehavioral problems at birth that persist into childhood.

The Foetal Medicine Research Centre has developed non-invasive methods to measure how much blood reaches the brain, and have described that this is a strong marker of increased risk for neurodevelopmental problems. The prenatal identification of babies at risk is especially important because it would allow us to take preventive measures during pregnancy and early childhood.

Prematurity

The main objective of this line of research on prematurity is to advance our knowledge of the causes of preterm birth. Despite improvements in managing pregnancy, prematurity is still a common outcome and is the leading cause of perinatal morbidity and mortality. It is crucial to understand what triggers premature delivery so that we can prevent it and improve perinatal outcomes.

The Foetal Medicine Research Centre is trying to refine detection of patients at risk of preterm delivery as well as optimise the management and care of neonatal patients in the clinical level. The group hopes that the development of this research line will minimise needless intervention and over-treatment, streamline patient management and achieve the best possible results.

Impact

The main objective of the research centre is to reduce the number of instances of adverse neurodevelopment in children and adults and make a difference in their lives. An important contribution of the team to that extent is the implementation of their research findings into clinical practice through their involvement in the writing of clinical national and international guidelines.

The group is also committed to sharing and spreading their knowledge in maternal-foetal medicine with the general public. They have launched Inatal, the first social website directly related to a medical referral centre. Inatal is aimed to pregnant women with no pathologies but doubts and concerns, and provides objective, useful information about health issues while encouraging the active participation of its users.

In the Cerebra research programme 2008-2013, a multidisciplinary research programme for the evaluation of diagnostic techniques and intervention measures for prenatal brain damage using growth restriction as a model, the Foetal Medicine Research Centre has achieved significant advances in our understanding of brain injury of prenatal origin. They demonstrated that even milder forms of foetal growth restriction are associated with a high risk of neurological damage, improved current understanding and changed clinical management of one of the major cause of neurodevelopmental problems in children. However, as usual in research, discoveries have led to new questions, challenges and ideas for better ways to improve even further towards a real reduction in the number and magnitude of neurodevelopmental problems of foetal origin.

The next six years

Cerebra are delighted to be in a position to provide funding for the Foetal Medicine Research Centre at the University of Barcelona for a further 6 years (between 2014 and 2019) to continue the innovative and influential work in the area of perinatal brain damage.

Three Peaks Trekkers Set Off

The three peaks team set off

The three peaks team set off

Cerebra’s Three Peaks Trek team has set off.

The morning of Monday the 18th of August saw Cerebra’s Three Peaks Trek team begin their epic journey to scale Pen Y Fan, Cadair Idris and Snowdon.

The team, Bran Bucca, Ben Jones, Jamie Pitman, Lee Herbert and Helen Woolley, will be walking all the way to their first peak and covering the distance between each one on foot, clocking an enormous 175 miles by the 27th of August.

So far their campaign has raised over £35,000 for children with neurological conditions and they’ll be collecting on the way.

The group have strong motivations for undertaking the challenge. Jamie Pitman said “My sister has cerebral palsy and the work Cerebra does to support children and families is amazing”. All of the walkers are excited about the challenge: “It will be a real test of endurance and bring a great sense of achievement,” said team leader Bran Bucca.

You can support the walkers by visiting their JustGiving page or by getting in touch with Cerebra on 01267 244221. You can also follow their progress on Cerebra’s Facebook and Twitter pages, as well as our website.