Tag Archives: London

Team Cerebra Gains Another Runner for London Marathon

Adam  during his 26 mile run from Nuneaton to Coventry in preparation for London

Adam during his 26 mile run from Nuneaton to Coventry in preparation for London

This year’s London Marathon is taking place on 24th April and we’re proud to welcome Adam Louth to team Cerebra!

Adam is 31 years old and works for Deloitte as a surveyor.

Adam told us: “I decided to run the London Marathon for the first time with my two brothers. Unfortunately they were both unable to get a place but I decided to commit and run it alone this year!

Two of my work colleagues have charities close to their heart and Cerebra has helped my colleague Mark whose son has cerebral palsy. I wanted to raise money for a charity where I could witness the positive effect the donations would make.

My goal is to complete the London Marathon, but If I can I want to hit the 4 hour barrier mark.”

If you would like to sponsor Adam, you can do so through his Virgin Money Giving Page.

Mum to Run London Marathon for Cerebra

Juliette

Juliette

Due to unforeseen circumstances, Juliette has been forced to pull out of this year’s London Marathon. Thank you for your support.

Mum of three, Juliette Edwards from Birmingham, has a very personal reason for running in this year’s London Marathon for Cerebra.

Juliette, a doctor, has three boys – Benjamin, Daniel and Joseph who are all on the Autistic Spectrum and she has reached out for support from Cerebra on several occasions.

Juliette told us her story in her own words, including why she wanted to give something back to Cerebra.

“My three boys all have learning difficulties and Cerebra has helped me a great deal over the years. At times I don’t think I would have managed without Cerebra’s support.

Our family journey started when Daniel was born prematurely at 35 weeks. He rapidly lost weight becoming just 4 1/2lbs. I hadn’t for one moment contemplated that anything untoward would happen in my pregnancy. The day before he was born I had a little bleeding but still went to work, as I had a check up appointment later that day with the midwife, so thought I’d just discuss it with her then. My consultant and I had a paediatric theatre list that morning, and our conversation whilst at work included her asking me how it was all going with the pregnancy. I casually remarked that I was sure there was nothing to be concerned about, but that I’d had some bleeding. She felt differently and sent me straight off to the maternity unit. Needless to say I didn’t go back to work, and was declared to be in labour that evening with Dan being born the next day. I had a humongous cannula in my hand, just in case I were to suddenly crash. I found the whole experience surreal, with all the monitors attached and staff busying about, as I’d never had anything ‘wrong’ with me before.

Dan Jo and Benji

Dan Jo and Benji

It carried on from there. Daniel was rushed down to the special care baby unit on day four as he couldn’t feed until the twenty sixth attempt. As a result he was tube fed for fourteen days. We went home at day eighteen with a tiny fragile baby. We were back in the hospital when Dan was six weeks of age for surgery as he suddenly developed bilateral inguinal hernia. He was four hours in recovery as his temperature had dropped to 32 degrees on the operating table! He was delayed with all his milestones – smiling, rolling, laughing, sitting but I hoped for the best and thought he’ll catch up, it’s just because he was early.

The health visitor was so concerned that at eight months we were referred, and so began a whole series of assessments and investigations, and three weekly visits to the child development centre for a whole term for OT and SALT review, culminating in a big multidisciplinary meeting, at which dyspraxia was diagnosed. It was said he likely had ADD and ASD too, but he was too young for these to be formally diagnosed as yet. I was told he would definitely need special schooling, and that the consultant was going to get the ball rolling for this, even though he was only 2, as such things took time to arrange. We carried on through toddlerhood with OT and physio interventions, as well as all the usual activities, I had gone back to ophthalmology when Dan was one, and started maternity leave again when Dan was 2 and a half, as Jo was born. How wonderful when he could just feed minutes after being born, and he appeared to be developing at a normal rate. How surprised I was when the health visitor expressed concerns when Jo was two and said he needed to be referred for consideration of ASD. Dan started school, and after a huge amount of toing and froing with the LEA, no statement was forthcoming for Dan, and he started at a mainstream school with 90 peers in his year, 30 in each class. Educationally, everything was a phenomenal struggle for him.

I was pregnant with Benji, and he threatened to be born at 32 weeks but he managed to hold on in there until 37 weeks. Benji’s development was delayed also from the outset, and he also had a fistula requiring surgery when just a few months old and also abdominal surgery for duodenal malrotation before the age of two. Alongside all the therapy input, and SEN meetings at school I was often going to appointments every day of the week.

I could write a book about all the things that happened, interventions I tried, support I gave. Then the tribunal battle to get Dan his statement and a place in special school, that would be a whole volume in itself. Benji’s school weren’t coping with him, nor he progressing in class, so the LEA put him forward for a statement at the same time, and with the LEA’s support in getting his school place, the process was so much easier, but still required a phenomenal amount of input none the less.”

Cerebra has been able to help Juliette’s family with advice and support, help through our Wills and Trusts scheme and a much needed family break at our holiday home.

This year the London Marathon takes place on 24th April. It’s one of the biggest running events in the calendar and Cerebra was very lucky to get a place in this year’s race. Lots of people applied to us for the place and competition was tough – we were delighted to offer it to Juliette and wish her the best of luck.

If you’d like to support Juliette you can visit her JustGiving page here.

Cerebra has places in all sorts of running events across the country – from half and full marathons to mud runs and colour runs. So if you fancy challenging yourself and supporting Cerebra at the same time you can find out more here.

 

 

Cerebra Reception at Number 10 Downing Street

The London Minds Group with Samantha Cameron

The London Minds Group with Samantha Cameron

On Tuesday 3rd November Cerebra held a prestigious fundraising reception at 10 Downing Street hosted by Samantha Cameron.

The reception at 10 Downing Street was an opportunity to celebrate the charity’s work while raising Cerebra’s profile and generating essential support.

Chris Jones, Chief Executive of Cerebra, said: “I am extremely grateful to both Mr and Mrs Cameron that we are able to be at No 10 Downing Street today. It is an honour shared by everyone present. Mr Cameron, as Leader of the Opposition, wrote to Cerebra with the following words: “’I am delighted to welcome the work of Cerebra, which has done so much to help support children, and their families, in cases where children are living with neurological conditions such as cerebral palsy. I am sure the practical support and information you provide has been a lifeline to people – especially parents – in times of need, and that the ground breaking research you have sponsored will help future generations too. Many people have cause to be grateful for all you have done’. I am sure then that Mrs Cameron’s kind offer to host today’s event at this venue, steeped in history and of such gravitas is not without the depth of sincerity that I imagine. We are proud of what we do. We are proud of the people with whom we do it. Most of all we are proud of the families who we support.  They are an inspiration and deserve all the recognition we can give. Today we are here at No 10 to do just that”.

Guests at the event were joined by several families that have received support from Cerebra, including David and Mary Jane Hoyle from Hull whose daughter Annie-May was born with massive brain damage. David and Mary Jane spoke movingly at the event telling guests that “when we were told about Annie-May’s problems we felt lost and alone with nowhere to turn. But Cerebra have been a true friend to us and have been with us on a journey from the start, giving us the support we needed”.

Laura and Brendon Jones explained that their eight year old daughter Violet has a very rare chromosome deletion. Her condition affects her in many ways – she is profoundly deaf and visually impaired, non-verbal and unable to walk or stand unaided. She has profound and multiple learning disabilities and has complex health needs. Despite all her difficulties Violet is a joy to all who know her. She has endured many operations, procedures, tests and hospital stays and is often poorly, however she is a happy, giggly girl who enjoys life to the full and loves to cuddle and be with her family. Cerebra have helped the family with a stay at their specially adapted holiday home, a grant for a specialist trike and sledge designed by our Innovation Centre. Mum Laura said “Life with Violet brings many challenges but Cerebra helps families like us enjoy the good times together, making special memories”

Cerebra’s fundraising group ‘London Minds’ were instrumental in ensuring the success of the evening. ‘London Minds’ was set up with the concept of forming a small group of individuals from various corporate backgrounds who identified strongly with Cerebra’s purpose and aims, and who were keen to promote the charity’s work to likeminded souls within the city, whether they be friends, colleagues or associates. For charities, opportunities to communicate their message to potential supporters in big business are few and far-between -arguably more so in London than anywhere else. The London Minds group aims to grow support for Cerebra organically, with members actively engaging friends, colleagues and associates who they feel will be genuinely interested in hearing about the charity’s work, and who might in-turn communicate this to others, via promotional and, in particular, fundraising events.

For further information on supporting Cerebra, becoming a Trustee or an Ambassador or about joining the London Minds group please contact SandiLl@cerebra.org.uk.

Meet Our London Marathon 2015 Team!

London marathonWe catch up with our team for the London marathon 2015!

The team at Cerebra are looking forward to the London marathon as this year we have four very brave people running it for us!

Some of you may know our first recruit – local radio DJ James Southon who has shows on Radio Carmarthenshire and Pembrokeshire. When Cerebra approached our local radio station Radio Carmarthenshire to see if any of the DJs would like to run the marathon for us, James stepped up and swiftly commenced with his training!

James told us: “I had sworn NEVER to enter another running race again.

In March of last year I ran the Llanelli half marathon and it nearly killed me! However, when I looked into the brilliant work Cerebra do with children suffering with neurological problems both locally and nationally I felt obliged to step up. They really do make such a massive difference.”

Race day, 26th April is James’ birthday so he is really making sure it will be one to remember!

Our next team member has a very personal reason for supporting us. Michael Harris is running for a very brave little boy who was born with Corpus Callosum and Cerebellar Vermis. Michael has watched the boy’s mother, who is a friend of his struggle to get information and answers about her son’s condition. Michael is raising money for us because we support children and their family’s needs and also help provide information to empower parents.

Andy Day, our next team member will be 52 years old on race day, but despite this, he recently climbed Mont Blanc before setting his sights on the marathon!

Andy is also running for personal reasons as his cousin’s daughter was born with Band Heterotopia.

Andy has watched as cousin Sharon has faced great hardships whilst raising daughter Sophie but has also seen the difference Cerebra has made to their lives. Sophie is now 20 and although life is still hard; Sharon has been able to find some support through Cerebra.

The final addition to team Cerebra is Steff Gadd who is raising money to thank us for funding a trike for her cousin’s son, six year old Harry.

We’re looking forward to cheering each of them on and remember, you can support three members of the team through their online giving pages: James, Michael and Andy.

We wish all of our marathon runners the very best of luck for 26th April.

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.

London 10k 2015 Challenge

10k team 2014

10k team 2014

Are you able to take up the challenge and run 10k for Cerebra this year?

For the fourth year in a row, Cerebra will be taking part in the British 10k London Run on Sunday 12th July.

In previous years, we have been lucky enough to have many brave and willing runners taking part in the race for us and in doing so, lots of money has been raised in order for Cerebra to continue with the work that we do.

Last year’s team did an excellent job with Alex Elsaesser completing the race for the fourth year running with us.

Many personal goals were achieved along the way with another member of the team, Sarah Jones managing to complete her first ever 10k after losing an impressive 6 stone in weight.

We are extremely grateful for everyone who has run for us and hope to make this year another one to remember.

We have an extremely limited number of places for this year but would love for anyone who would be interested in taking up the challenge and taking part in the race to raise money for Cerebra to get in touch.

The race takes its runners around some of the most iconic sights that London has to offer including Big Ben, the London Eye and Buckingham Palace – perfect for keeping even the most amateur runner motivated until they cross the finish line!

We ask that each runner tries to raise a minimum of £500 so that we can really try and make 2015 a year to remember!

If you are interested in taking up the challenge, please get in touch by email on sarahj@cerebra.org.uk or by phone on 01267 244226.

Carmarthen Slimmer’s 10k Challenge

Sarah Jones preparing for 10k race

Sarah Jones preparing for 10k race

A Cerebra slimmer has dropped nearly six stone and is getting ready to embark on a gruelling 10K run in aid of children with neurological conditions.

Sarah Marie Jones started her slimming journey last year and in little over 12 months has lost five stone eleven pounds. Encouraged by work colleagues as well as friends in the slimming group she attends, Sarah gradually began to shed the pounds and see the health benefits that come with losing weight.

“At my start weight, I struggled to do the simplest things,” Sarah explained, “I even struggled to get off the sofa and I knew then that I had to do something about it.” As she started to approach a healthier weight, she started to go to the gym to tone and improve her fitness levels and was offered the opportunity of running the British London 10K on July 13th. “At first I was concerned that I wouldn’t be able to run but I wanted to give myself a bit of a challenge to prove how far I’ve come,” she continued.

As well running to challenge herself, Sarah is also using the opportunity to raise funds for Cerebra. She is hoping to raise £500 to help improve the lives of families affected by neurological conditions.

You can follow Sarah’s progress and her own frank account of her training through her blog:www.runmyselfskinny.blogspot.co.uk .

If you would like to donate, you can visit her Just Giving site at www.justgiving.com/runmyselfskinny .