CIC Need Testers for Exciting New Product!

Oxygen Trolley Plans

Oxygen Trolley Plans

The Cerebra Innovation Centre (CIC) are currently working on plans for a new Oxygen Trolley and we are looking for testers.

We mentioned in the last newsletter that one of our plans for this year is to develop our little Oxygen Trolley to incorporate as many uses and make it available for as many children as possible.

So the plan currently is to make one product that will enable children to transport their own oxygen, ventilator or food pump, and some toys/books etc to make it more inclusive and more of a toy that carries their equipment.

We are trying to develop it so that it can be pushed along and thereby give support as a walker, or pulled along for the more mobile children, and can be sat on to act as a ride-on toy! We have one more addition to make that is not shown here and this is to add steerable wheel to the front for children who are more mobile and stable.

Shown below are some photos of the current design. This first prototype is being sent to some very eager Occupational Therapists in the Long Term Ventilation Team at Queens Medical Centre in Nottingham. They are going to assess the product then pass it on to its new owner, a 2 year old boy.

The next one is shooting off to Liverpool for the same assessment by the Liverpool team. We are meeting some more OTs in the Royal Bromton Hospital in London and hopefully by then will have the design perfected.

trolley 1 website

Oxygen Trolley

 

BUT… we still need you!! If your child could benefit from this product we would love to hear from you. We need lots of willing product testers to ensure the concept works and to help us iron out any problems. If you think this would help your child, please get in touch and join the fun! Our overall aim is to be able to make a really good product that we will be able to sell commercially and earn an income for Cerebra.

If you would like to get in touch,  please call on 01792 483688 or email cic@cerebra.org.uk.

Mini Racing Launch a Success

Maria Brown and her mini

Maria Brown and her mini

Maria Brown races minis but was forced to take a break after her son was diagnosed with Cerebral Palsy.

A little while ago we bought you the story of Maria Brown. Maria is just returning to motorsport racing with minis and wants to use her influence to raise awareness of the condition and charities that have helped her along the way, including Cerebra.

We were pleased to hear that the launch of Maria’s project at the international Autosport show, with the car on the British Racing and Sports Car Club (BRSCC) stand, was an amazing success. Maria’s car attracted an unprecedented amount of attention by both the show visitors and media. She was also interviewed on the rising stars stage and the Motorsport news stage, where they were celebrating sixty years of publishing.

Maria is now on a quest to raise the necessary funds to ensure that I can afford to compete in the entire 2015 season. She is looking forward to the prospect, and to be able to have her son at all of the events will be very fulfilling for her.

Maria said: “In life the unexpected can happen, in my case my whole world was turned upside down. I hope to act as an example to those who have dreams to never give up. This is an amazing opportunity for me to show that with the right motivation anyone can face adversity and still achieve their dreams, with belief and faith in themselves. I am so humbled by the unbridled support for my project and the effort and time that so many have dedicated to make this all possible, I cannot thank them enough. Being able to sit on the start grid again was a distant dream and now I am about to contest a championship, totally unbelievable. I love my little man with all my heart and can’t wait for him to see mummy race it will be a very proud moment for both of us.”

We Want You…

Sarah Hattersley and Pamela Smith on the far right

Sarah Hattersley and Pamela Smith on the far right

Would you like to have fun while raising money for a great cause? Come and be part of our team and make a difference in your community.

We have two Community Fundraisers based in Leeds – Sarah Hattersley and Pamela Smith. These two lovely ladies organise lots of exciting events in the area throughout the year and would love for you to join them.

Last year Pam and Sarah did lots of bucket collections in many of your local supermarkets which help to raise awareness of Cerebra as well as raising vital funds without which we could not continue to help families.

As well as collecting, Sarah and Pam have also attended festivals and fun days such as the Penistone Show where they enjoy soaking up the atmosphere as well as selling crafts hand made by Sarah herself.

Sarah said: “We already have lots of exciting dates lined up in our calendar – the only thing that can make it better is you! If you can spare an hour or two to join in the fun and help out at collections, music festivals, runs and races, dinners and balls and athletic days, we’d love for you to join us”.

If you, or someone you know would like to help out or have an idea for an event then please get in touch with Sarah at sarahh@cerebra.org.uk or on 07580 796615.

CIC in 2015

CIC Scoot seat

CIC Scoot seat

The Cerebra Innovation Centre (CIC) are looking forward to a busy 2015 and are calling on you to give them their next challenge!

In 2015 CIC will be working harder than ever to bring you new and exciting products!

As usual, if there is anything we can help with please give us a call. Maybe:

  • You can’t find something that works appropriately for your child or your needs
  • You have an idea for a product that will help your child
  • You might have made something for your child that worked really well and want to make a smart version of it
  • You might have invented something that you would like to share and make more widely available for others.

Go on,  give us a challenge – get in touch on 01792 483688 or emailcic@cerebra.org.uk

CIC Need Testers for Exciting New Product!

Plans for the new Oxygen Trolly

Plans for the new Oxygen Trolly

The Cerebra Innovation Centre (CIC) are currently working on plans for a new Oxygen Trolley and we are looking for testers.

We mentioned in the last newsletter that one of our plans for this year is to develop our little Oxygen Trolley to incorporate as many uses and make it available for as many children as possible.

So the plan currently is to make one product that will enable children to transport their own oxygen, ventilator or food pump, and some toys/books etc to make it more inclusive and more of a toy that carries their equipment.

We are trying to develop it so that it can be pushed along and thereby give support as a walker, or pulled along for the more mobile children, and can be sat on to act as a ride-on toy! We have one more addition to make that is not shown here and this is to add steerable wheel to the front for children who are more mobile and stable.

Shown below are some photos of the current design. This first prototype is being sent to some very eager Occupational Therapists in the Long Term Ventilation Team at Queens Medical Centre in Nottingham. They are going to assess the product then pass it on to its new owner, a 2 year old boy.

The next one is shooting off to Liverpool for the same assessment by the Liverpool team. We are meeting some more OTs in the Royal Bromton Hospital in London and hopefully by then will have the design perfected.

BUT… we still need you!! If your child could benefit from this product we would love to hear from you. We need lots of willing product testers to ensure the concept works and to help us iron out any problems. If you think this would help your child, please get in touch and join the fun! Our overall aim is to be able to make a really good product that we will be able to sell commercially and earn an income for Cerebra.

If you would like to get in touch,  please call on 01792 483688 or email cic@cerebra.org.uk.

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.

Alissa Joins Team Cerebra for 10k

Alissa Elsaesser

Alissa Elsaesser

Alissa Elsaesser, who was born with Downs Syndrome, has set herself the challenge of running this year’s London 10k to fundraise for Cerebra.

This will be the fourth year that Cerebra have taken part in the British London 10k race and we have been very fortunate to have many dedicated people taking part in the race on our behalf.

This year is turning out to be no exception and we are very pleased to welcome Alissa Elsaesser to team Cerebra!

Alissa was born with Down’s Syndrome but she has never let anything hold her back and is determined to rise to the challenge and complete the entire route.

Alissa told us a bit more about herself: “This is my last year at College and I am planning to run 10K to raise funds for Cerebra. During the holidays I volunteer at Cerebra, helping with the Raffles. My parents think I am very special. They are right. I like music and singing, cooking and ski twice a month at dry ski slopes. I also am a member of our local Gateway Club and have many friends there. I will need to train a lot to run 10K.”

Running 10k will be a huge challenge for Alissa but she will have the support of her father Alex Elsaesser who will be running the race for the fourth time for Cerebra this year.

“This will be a big challenge for her. She is trying to raise £500 for Cerebra and if you are able to sponsor her, it would be a great encouragement for her to keep training,” Alex said.

You can support Alissa through her Just Giving page. We also still have some places left if you would like to join Alissa and Alex on team Cerebra. Email sarahj@cerebra.org.uk or call 01267 244226 if you are interested in taking part in one of the most iconic races in the country.

Jack Loves his New Sensory Equipment

Jack Bull in his dark den

Jack Bull in his dark den

Little Jack loves his new sensory toys, funded by Cerebra.

Five year old Jack Bull has Autistic Spectrum Disorder as well as some sensory problems. His condition means that Jack is non verbal and is very over active, often finding it very difficult to relax. This had meant that family life was often difficult, especially when it came to bed time!

Jack’s mum Claire contacted Cerebra and we were able to help to provide funding for sensory equipment for Jack through our Grant Scheme. This meant that Claire was able to purchase a Dark Den and starter projection kit for Jack and the positive effect that this has had on Jack is already noticeable.

Claire told us: “The Dark Den enables Jack to have his own dark, calm place to retreat to and desensitise. We put in the fibre optic strands and some cushions inside along with his weighted blanket as Jack loves to burrow away and he enjoys his own space. Jack is very visual and he is mesmerised by the display from the projector. He settles down, relaxes and enjoys the various visual effects and images. He then seems calmer and more chilled out. This is perfect to relax Jack before bed as he struggles to switch off. We use the projector everyday without fail.”

As a result of using the sensory equipment daily, Jack’s behaviour has shown remarkable improvement. Not only has this improved family life but Jack himself seems a lot happier now that he has his own space in which to relax.

Cerebra’s grant scheme funds up to 80% of the cost of equipment and services to help make life easier and more enjoyable for children with neurological conditions. We provide a range of equipment from trikes to walking frames – anything that will directly benefit your child and shouldn’t be provided by someone else such as the NHS, Social Services, LEA.

You can find out more about our grants scheme here.

Legal Entitlements Team Help Overturn Council Decision

Kelsey

Kelsey

Cerebra was recently contacted by Samantha, a parent who had been struggling to get school transport for her son, Kelsey, who’s 14 and has Down’s Syndrome.

Her local Council turned down her application for transport on the grounds that the family lived within a walking distance of 3 miles and there were no exceptional circumstances to justify a departure from the Council’s policy.

Samantha appealed, but the Council stood by its original decision. Samantha then contacted the Legal Entitlements Research Project for help with preparing for a further appeal to the Council’s Panel.

We looked at her case and provided some advice about the Council’s duties. We explained that the Council owed a duty to provide transport to other categories of ‘eligible’ children, in addition to those who lived more than 3 miles from the school. These included pupils who couldn’t reasonably be expected to walk to school, because of mobility problems or health and safety issues related to their special educational needs or disability.

We were delighted when Samantha told us that the Council had contacted her before the date of the Panel meeting and overturned its previous decision. The Council reinstated Kelsey’s transport, updated the information on its website and arranged for a Lead Officer from the Disability Team to oversee transport decisions to avoid any repeat occurrences.

Samantha was keen to share the good news with other families who might find themselves in a similar situation:

“The advice and support I received from you & the Cardiff team and also the moral support from the Chair of the local branch of the DSA were the things that kept me going. The legal advice your team gave me made me determined to keep fighting for what Kelsey is entitled to.

My family is so very grateful and Kelsey is so excited about going to school on the ‘big bus’ (as he calls it)! It is easy to ignore how important it is for children with disabilities to be able to have a little independence in their lives and, at 14 years old, as Kelsey is now, travelling to school with his peers, rather than being taken by his parents is such a great thing for him. He’s so proud to get on and off that bus by himself.”

If you’d like some legal advice from the Project regarding your child’s access to services, please have a look at the Project Guidelines for further details and complete our online request form. For more information, contact us on 01267 242582.

Pupils Rally Together to Fundraise

Staff and pupils at Redland High School for Girls in Bristol have raised money for Cerebra with a week of fundraising activities.

Cerebra was nominated by one of the pupils at the school after a relative of theirs received a specially adapted trike which was funded by us. This personal experience helped to spur on fundraising efforts which were organised by the school’s Chestnut House.

Pupils held cake and jumble sales, raffles, guess the teddy competitions and the pupils’ favourite – non-uniform day.

In addition to these activities, one pupil, Danielle Beach, also decided that she would go the extra mile and do a 54 mile cycle ride! In doing so, she contributed £155 to the final fundraising total which was an impressive £989.18.

Cerebra would like to say a massive thank you to everyone who was involved with fundraising for us.

If you would like to find out how you can something similar to support the work Cerebra does, please contact Allyson Silverthorne at allysons@cerebra.org.uk or 01267 244222.