CIC News – June 2014

We catch up with the guys at the CIC and find out what they’ve been up to lately.

CIC have been busy designing and building products to help our young members and their families as usual! The requests for design challenges have been coming in steadily but there is always room for more! If there is anything we can help you with, please feel free to give us a call. Remember that we are here to help with anything product related, for example we could help source products, or if you have an idea for a solution that could help your child we should be able to design and make something…..and if you simply have a problem with no idea for a solution…those are the ones we love the best- give us a call or drop us a line and we will rise to the challenge!

Here are a few recent examples of products that we have been working on.

Weighted Capscic-cap
CIC helped with a couple of recent requests for weighted caps to help with Tourettes and Autism. The families kindly supplied hats that had been tried for size and were the correct style and brand (very important consideration for our young members!) and CIC used their carefully developed method of making very slim flexible weighted pads to fit into the hats. From the outside you would never know there is any difference in the hat, but the resultant behavioural changes appear to be fantastic!

“Hi Ross, just to let you know Jamie’s hats arrived yesterday. He is so happy with them. He wore his blue one in class today and he said it helps him concentrate. He is feeling a lot happier in himself. Thank you so much for taking the time to make them. Jamie will be sending you a card this week, thanks again D”

An extra tall baby-gate
This request was for a stylish gate that would enable Mum, Sinead, to know that her son is safe and well inside his room and so removing the risk of him getting to the stairs, whilst still being able to see each other through and decorated with Ben 10 images. As usual, the gate had to fit the style of the house and not have a negative impact on the environment or look too restrictive. We decided on a simple form with a curved top to break up the shape and then found some lovely images of Harvey’s favourite TV character.

“Hello I received the gate and it is wonderful I cannot thank you enough also Harvey loves it with the ben10 stickers thank you very much for your time and effort. I have made a donation to cerebra thank you again x S”

CIC writing clopeThe CIC Writing Slope
Something that we have been working very hard on recently is the design of our new writing slope. You may remember that we told you about one that we had made for a young lady last year, and from the response to that story we have now made another 30 units! The writing slope is made so that it can help children with writing and reading by helping to hold the paper and books steady and in a useful position. It has many innovative features such as: Adjustable angle controlled with a gas spring, a pen holder which negates the use of pen lids, magnetic reading and writing ledges and a carry handle.

Here is some of the feedback we have had so far:cic-writing-slope

“Thank you so much for Jack’s writing table, it is brilliant. I will get a donation sent to you and also a photo!”

“I am so very grateful for the beautifully crafted writing slope that arrived for Sim this morning! He is going to be incredibly excited when he gets home from school! Sim is 5 and a half and has Down’s Syndrome. He finds it very difficult to read books or try and draw/write when paper is placed directly on the table and we have been searching for a slope that enables him to do this, but have never managed to find one that hasn’t got a big lip, sits too close to the table, etc. The one you have made is absolutely fantastic and will be PERFECT! I love the attention to detail! The carry handle, the magnetic strips, the plastic tabs to keep books open, the pen slots, etc. Please do thank the team for all the hard work that has gone in to producing this for him. We really are immensely grateful.”

If this is of interest to you, please give us a call on 01792 483688 to discuss your requirements!

Tom’s Playring

Tom and his playring

Tom and his playring

Tom’s mum sent us a great picture of the Playring thanks to Cerebra.

The charity provided a Playring for Tom from the toy library, as well as helping them with a GoToSeat.

As you can see in their pictures, Tom loves both. He has developmental delay, but the Playring and GoToSeat help him sit up and take part in his physio to aid his development.

It also means he can join the family and enjoy shopping trips.

“He loves being in the trolley,” his mum Laura told us. “We’re so grateful to the charity.”

The GoToSeat was developed by Leckey and our Cerebra Innovation Centre. Take a look around our website to learn more.

Don’t forget that Cerebra receives no government funding – all of this is thanks to your support!

Cycle ride for Cerebra

Group from Carmarthen Town AFC getting ready to start cycle rideA group of cyclists are setting off on a cycle ride to raise money for children with neurological conditions.

The group, made up of Carmarthen Town AFC supporters and colleagues, are heading off for a 250 mile ride from North Wales to South Wales to raise money for Cerebra.

The charity has been named the Carmarthen Town AFC’s charity of the year.

Emlyn Schiavone, Phil Williams, Paul Evans, Ceri Rees, Ashley Williams, Moira Gorman and Anthony Parnell are riding in memory of Nigel Williams, former treasurer of Carmarthen Town AFC. The group holds two rides every year in his honour.

You can sponsor Anthony, Paul or Ashley through JustGiving. Cerebra receives no government funding, so every penny raised through events like this really does make a positive difference!

If you’d like to hold an event to raise money for us contact our community fundraising team by calling 01267 244 222.

Research update – June 2014

UpdatepicA selection of recent news, research, reports and events.

In the news

Autism resolution passed at WHA Research

Autism reports that in an immediate board approval, the World Health Assembly (WHA) – the decision making body of the World Health Organisation (WHO) – passed recently a resolution regarding autism, placed by Bangladesh last year. The assembly urged member states to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health.

Autistic boys exposed to higher levels of hormones in womb, study finds

The Guardian reports that research on children in Denmark has found that boys with autism were more likely to have been exposed to higher levels of hormones in their mother’s wombs than those who developed normally. The findings add to a growing body of evidence that the biological foundations of autism are laid down well before birth and involve factors that go beyond the child’s genetic make-up. The results may help scientists to unravel some of the underlying causes of autism and explain why boys are four to five times more likely to be diagnosed with the condition, which affects around one percent of the population.

Research

Timing is everything: scientists control rapid re-wiring of brain circuits using patterned visual stimulation

In a recent study published in Science, scientists from Montreal Neurological Institute at McGill University and the McGill University Health Center show for the first time how the brain rewires and fine-tunes its connections differently depending on the relative timing of sensory stimuli. The researchers have been studying the formation of brain circuitry during development to better understand healthy brain wiring. They also hope such studies will lead to development of more effective treatments for nervous system injuries, as well as therapies for neurodevelopmental disorders such as autism and schizophrenia.

Twin study set to explore autism, attention deficit overlap

Sfari reports that a new Swedish twin study plans to search for the shared genetic and environmental origins of autism and attention deficit hyperactivity disorder (ADHD), which are often mistaken for each other. The new project aims to assess identical twin pairs using a variety of measures, including behavior and brain imaging. The researchers plan to compare the characteristics of the discordant twin pairs (meaning only one of the two has a disorder) with those of typically developing twin pairs.

Risk of brain injury is genetic

Researchers have identified a link between injury to the developing brain and common variation in genes associated with schizophrenia and the metabolism of fat. Scientists at the University of Edinburgh, Imperial College London and King’s College London studied genetic samples and MRI scans of more than 80 premature infants at the time of discharge from hospital. The study builds on previous research, and suggests that premature babies’ risk of brain injury is influenced by their genes, a study suggests. Researchers add that future studies could look at how changes in these genes may bring about this risk of – or resilience – to brain injury.

Clinical research: Angelman gene variants alter symptoms

Sfari provide a brief summary of a study published on 19 March in Research in Developmental Disabilities, which reports that the nature of the mutation that leads to Angelman syndrome, a disorder characterized by speech impairment and developmental delays, affects the disorder’s presentation.

Brain Methylation Map Published

The Scientist reports on research published on 4 July in Science that shows that epigenetic modification varies greatly over the course of development but is remarkably consistent between individuals and between mice and humans. Researchers at the Salk Institute in San Diego have made an extensive map of several types of methylation in the brains of mice and humans, hoping to understand the role of epigenetic changes in the brain as mental illnesses took hold in humans.

Reports

Sensory issues and autism: an insider’s guide

SEN provides a summary by Paul Isaacs that outlines some of the main sensory difficulties faced by people with autism and how they affect their everyday life.

Events

Towards a Positive Future

A one-day annual national conference for parents of children with special educational needs and the professionals who support them. Central London, Thursday 19th June 2014.

Engage in their future National Conference

An exceptional programme of speakers and workshops will be delivered around the theme of ‘Improving life chances for children experiencing behavioural, emotional and/or social difficulties (BESD)’. Wyboston Lakes, Cambridge, Thursday 3rd and Friday 4th July.

Royal Masonic Trust for Girls and Boys support Cerebra

father and sleeping babyThe Royal Masonic Trust for Girls and Boys has made an incredibly generous donation of £12,000 towards Cerebra’s Sleep Service through their Stepping Stones scheme.

Cerebra improves the lives of children and families living with a neurological condition through practical support and funding vital research.

One of our most needed services is our Sleep Service. Parents and carers of children with neurological conditions often have to deal with severely  disrupted sleep which can make an already challenging situation that much harder.

Cerebra’s sleep practitioners provide families with advice on a range of sleep issues in children such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety.

The generous grant from the Royal Masonic Trust for Girls and Boys will enable us to continue funding this much needed source of support and make a positive difference to thousands of families. We are extremely grateful for their support.

The Stepping Stones scheme is one way in which Freemasons in England and Wales support children in their communities who are most in need. You can find out more about the scheme here.

Actress Samira Mohamed Ali is our new ambassador

Samira Mohamed AliWe are delighted to announce actress Samira Mohamed Ali will be an Ambassador for Cerebra.

Samira is an award-winning International Actress and Brands Model who is currently working with many leading global companies. From a very young age, Samira started off as a model and led many high profile campaigns through her entrepreneurial skills. Not only was Samira known as a model, but she was also seen as a strong businesswoman, creating new marketing and innovative strategies for clients within the commercial world.

While she was still modeling, she worked part time for the world’s largest international bank (HSBC), becoming onequote-samira of the youngest bankers in the UK. At this point, aged just 21, Samira was given her first opportunity to test her presenting skills – interviewing top banking directors and financial executives for HSBC’s Internal Communications Department, a TV channel aired once a week to all HSBC branches across the UK and US.

Samira is currently the Ambassador for FilmInWales and works with the Welsh Government in attracting co-productions and inward investment to Wales from Bollywood and the US. Samira has recently signed as a lead role in a major movie in India and will also star as one of the lead roles for the ‘Dr Who’ movie – the Largest Fan Funded Movie ever in the US at the beginning of 2015. Her performance in Award Winning Molly Crows Movie received great reviews from film critics and the recent premiere gained support from Hollywood Actor Michael Sheen.

quote-chrisSamira has just returned from the US where she was this year’s UK Ambassador for BritWeek Miami and co-hosted the UKTI GALA Awards with Sean Yazbeck and presented the Award to CEO of Brightstar Corp. Marcelo Claure, partner in David Beckham’s new Miami League of Soccer.

The Neath born actress, said “This is a real privilege and honor to have been asked to be an ambassador for such a unique charity. I am very passionate about Cerebra as it does exceptional work with supporting children and their families and I hope it continues to grow year on year so that the service can be offered to more people across the UK”.

On 29th May Samira visited the charity’s headquarters in Carmarthen to meet staff and families who are currently being supported by the charity. Chris Jones, CEO of Cerebra said “Having Samira as our Ambassador will help us raise the awareness of the charity throughout the UK and internationally. It is very exciting to have Samira representing us and especially at our 2014 Awards ceremony in London for the children to be recognized and presented by such an inspirational figure that is also very supportive of us here in Carmarthen. We are very grateful to Samira for committing her time to us in between her busy filming schedule.”

Take a look at a video from the day and find out why our ambassadors are so important to us.

samira2

Family Fun from Circus Starr

CircusA wonderful time was had by families in Sheffield recently at one of our Cerebra day’s out.

Thanks to Circus Starr families in Sheffield had the chance to enjoy a fun-filled day out, including hilarious antics from everyone’s favourite clown, Nicolino, ever-more daring Chinese Pole and Aerial Strap performances from the fabulous Serik Brothers as well as spectacular knife balancing acts from the mesmerising Miss Lara.

Circus Starr is a touring circus troupe boasting world-class, professional artists from across the globe. It was first founded in 1987 to help raise much needed funds for local charities whilst providing free seats for thousands of disadvantaged, disabled or vulnerable children.

Cerebra regional support officer Lynne Bowker organised the event, giving families the opportunity to enjoy something special.

“Taylor and Alice look like they had a great time,” she told us. “Their dad also happened to be the Magicians Apprentice and was even more excited than they were!”

Thanks to your donations we’re able to organise events like this. Keep an eye out for future days out.

£1500 winner

Paul Slade and his dog DjangoAnother Cerebra supported has been counted in!

Another Cerebra supporter has won £1500 in our Count Me In Lottery!

Paul Slade, pictured with his dog Django, one the weekly prize by taking part in our lottery. Every week a new winner is crowned after donating just £1.20 a week.

The money raised through our lottery is vital to supporting children and young people with neurological conditions all over the UK.

Our lottery is the quickest and simplest way to show your support. Just click here to learn more and find out how to join.

Congratulations Paul!

Dawn’s Rock and Roll Marathon

Dawn taking part in the Rock and Roll MarathonA huge well done to Dawn and Martyn for running the Liverpool Rock and Roll marathon!

On the 25th of May Dawn and Martyn completed the Liverpool Rock and Roll Marathon, raising over £600 for Cerebra!

Although neither of them had run a marathon before, Dawn decided she wanted to raise money for a charity like Cerebra thanks to her niece Abbie, who has cerebral palsy.

“It’s been a hard long 18 week training slog,” she said, “taking me to places mentally and physically I have never been before.”

It was all worth it in the end, however, with Dawn finishing the gruelling run in just over four hours. The run took them past some of Liverpool’s most iconic landmarks with live bands and music helping the runners on their way.

Everyone at Cerebra says a huge thank you to Dawn and Martyn for taking part in the marathon. Every penny raised is vital to making a positive difference to lives of children like Abbie.

Finding Local Information

We take a look at some good ways of finding information on services and support in your area.

One of the hit-and-miss aspects of finding information is knowing that something exists, in order to search it out.  It is possible to miss out, at least for a while, on services, opportunities, equipment etc. because their existence has not yet come to light.  This article points to sources of information that either list what is available or lead to contacts with local people who will know.

Finding public services

Many city, county and district councils split what they publish, between visitors’ and residents’ information. A family with a child who has additional needs might want to consult both kinds, whether that is just for a visit or to put things in place for a new situation / area; broadly speaking, for both leisure / local highlights / informal activities and statutory / community services. https://www.gov.uk/find-your-local-council will find the contact details for a local authority in a county or city, however it can be overlooked that there are different kinds of councils, and more than one may cover the same area.

Smaller town and parish councils can be a source of useful local knowledge. An example comparing the type of information available is Patchway Town Council, which exists within the South Gloucestershire unitary authority (“unitary” indicating that it functions as both a county and a district council). Local authority departments may go under different titles but will include children’s services with children’s social services, education, adult social services, housing, planning, Disabled Facilities Grants, discretionary grants, trading standards, transport and disabled vehicle parking among others.

The local authority will cover some community health-related services, but this side of things will be NHS-based or linked to the NHS in some way. For example, equipment services are likely to cross over between district nurses linked to GP surgeries, and social services (although if you are just visiting an area and need some temporary equipment, the local branch of the Red Cross might be the place to start.) To find local health services, NHS Choices, gives some details and links to parts of the UK from “other NHS sites” at the bottom of the page.

All or most of the above will be very familiar to people with some experience, but to those who are new to it, it can seem like a maze.

A few other links relating to public services:

Local Family Information Services, which provide a range of information on services available to parents, including parents of disabled children.

NHS Choices services search, to find local health-related services.

Transferring to new services, including records, can often be assisted by the services you are moving from. Capability Scotland publish a guide for people moving to there with a disabled child, some of which could also be useful in other parts of the UK. A quick reference to all your child’s needs and existing services (such as a Personal Portfolio) can be a useful tool.

Transport information can be found at: Traveline.

Finding charities and other support

Good starting-points to get the lie of the land, as it were, are libraries (and librarians) – nearby ones can be found by entering a postcode or location name at: http://www.findalibrary.org.uk/#Start.

Tourist Information Centres are listed at: http://www.information-britain.co.uk/tic.cfm (in Northern Ireland, Visitor Information Centres, http://www.discovernorthernireland.com/Visitor-Information-Centres-VICs–A2216).

Voluntary services organisations are likely to know what charities and informal groups are active in an area: in England, these are the Councils for Voluntary Service (CVS), listed at: http://www.navca.org.uk/directory/home.aspx. Wales has County Voluntary Councils, listed at: http://www.wcva.org.uk/members-partners/county-voluntary-councils. In Northern Ireland, the NICVA lists the organisations at: http://www.nicva.org/members_a-z, and in Scotland, many voluntary organisations are listed by area at: http://www.iscotland.co.uk/local/charities-and-voluntary-organisations/, and the umbrella body is the SCVO.

Another source of information about carers’ services and support groups in England, searching by town or postcode, links from http://www.nhs.uk/CarersDirect/guide/parent-carers/Pages/Parentsupportgroups.aspx.

For finding private services and suppliers: http://www.thephonebook.bt.com/publisha.content/en/index.publisha# (the listings here include youth organisations and some local support groups under “community groups”). This is not to overlook the other types of directory, yellow pages etc.

For regional and national groups, and wider organisations and services that include local activities; Netmums, contains discussions with people who have already been involved with some of them.

Local offices of national charities are good at knowing what else there is in an area, the characteristics and the contacts. Both local authorities and voluntary services are likely to list them, or it may be a case of looking at the website of the national charity concerned. For example, we have Cerebra regional family support workers around the UK.

A note about moving to a new area in the UK

There are broadly two types of people in this; those who like to research and get a good picture of a place and what is available, and those who would rather identify one key service provider for their child, or one relevant parents’ group, and find out from them what else there is when they get there. Most people who are interested to read this article on the Internet probably lean more towards the research approach, and it has to be said that at least some research is a good idea, not only in terms of looking up information, but also in terms of following up that information – remembering the salutary case of a family with a child whose educational needs were not being met well where they were living and consideration was being given to a specialist residential placement a long way from home. The family wanted their child to continue to live at home, so they uprooted everything else in order to move to a county where there was a day-school that, on paper, appeared to cater for the needs. However they did this without asking the school and, having arrived there, they found that the school did not agree. Another thing that can happen with local information – or any information – is that a facility may have changed since it was last put on to the Internet, even by an official source. I found out myself, recently, that this even extends to bus timetables, entailing a long wait at the bus stop.

If there is a choice about what area to move to, Neighbourhood statistics, and a school finder, which includes Ofsted reports etc., may be of interest.

The charity Shelter provides a basic reminder list of things to consider when moving home.

Other local intelligence

Grants from charitable trusts are often tied to what geographical area you live in, even sometimes covering a small area such as a village. You can search for these by postcode and/or other criteria at http://www.turn2us.org.uk/default.aspx.

Three 21st-century resources that are useful when you need to know about a local environment, either for a visit or to move to the area, are satellite imagery, online versions of local newspapers and local radio stations that provide online listening facilities. Streetview, Google Earth or a route-finder, for example, can give a view of an area or postcode that indicates whether there is a safe garden / park for a child to move about outside, how near a place is to facilities, what kinds of roads there are, and other things. The newspapers and radio stations will give some idea of the flavour of an area, what’s on, and probably some specific information as well.

Going abroad

The government publishes a series of “Living in” guides, covering a number of countries, containing essential local information for people planning to move abroad.

If you are looking for a particularly specialised or very specific service for a child within an area, Cerebra’s regional office or the national helpline can advise on further sources for that information.