Category Archives: Events

Poppy’s Triathlon Dream

Go Poppy!

Go Poppy!

Eleven year old Poppy Jones from Abergavenny has achieved her dream of competing in a triathlon with her dad, Rob.

On 26th June 2016 Poppy Jones and her dad Rob took part in the Cardiff Triathlon together to raise money for Cerebra. But they faced an additional challenge – eleven year old Poppy has cerebral palsy and Rob pushed and pulled her around the course using custom made equipment specially designed by our Innovation Centre.

Eleven year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through. Dad Rob explains “there have been times when it has been very touch and go and we feel very lucky that she has been with us for the last 11 years”.

Poppy takes to the water.

Poppy takes to the water.

But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit.

Rob, meanwhile faced a challenge of his own in getting fit for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. At Christmas he could only manage two lengths of the local swimming pool and is using his ancient bicycle to train.

The cycling stage

The cycling stage

Mum Rachel, along with the rest of the family and friends, were right behind Poppy and Rob and are fully supporting them all the way, providing all the back-up and help they need. Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

Crossing the finish line

Crossing the finish line

The project has been a huge challenge for Cerebra’s Innovation Centre who designed and made the equipment that Rob and Poppy needed to take them to the finish line.

In this video, Rob and Poppy tell their story in their own words:

We would love it if you could support Rob and Poppy! If you would like to donate please visit www.justgiving.com/Rob-Jones42.

We would like to thank the following companies whose sponsorship has helped to make Poppy’s dream a reality: Dischro Creative white

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Mental Health and Well-being Conference Write Up

Improving Mental Health and Wellbeing for Young People with Autism, ADHD and Learning DisabilitiesOn the 28th April 2016 we held our Annual Conference at the Royal Society of Medicine in London on ‘Improving Mental Health and Well-being for Young People with Autism, ADHD and Learning Disabilities’.

Our aim is to make sure that the needs, and voices, of young people with these conditions are not lost in the current discussion surrounding mental health.

With the exceptionally high calibre of professional speakers, including a number of young people and the variety of topics covered, hopefully delegates felt that they enhanced their knowledge and understanding by attending our Conference.

The first session of the Conference was ‘Risks to mental health and well-being in children and young people with a neurodisability’. This part looked at the current research that is being conducted around genetic and biological causes of mental health disorders, mental health problems in children with intellectual disability and co-occurring psychiatric disorders in children with Autism Spectrum Disorder. The speakers in this session were:

Dr Andrew Cuthbert (Institute of Psychological and Clinical Neurosciences, Cardiff University)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Professor Emily Simonoff (Institute of Psychiatry, King’s College London)

After a superb lunch, the keynote address centred on ‘Mental Well-being and involving young people in defining the agenda’. This presentation was given by:

Dr Cathy Street (The National Children’s Bureau), accompanied by Jack Welch and Kiri Joliffe (NCB Young People Advisory Group)

This session focused on the benefits of children and young people’s involvement and participation in mental health and a short video was shown where young people talked about what it means to grow up happy. Both Kiri and Jack spoke, very bravely, of their own experiences of living with mental health issues and autism. They also stressed the importance of listening to young people.

Following a short break, the final session ‘Working to improve mental health and well-being’ comprised of talks given by:

Mair Elliot

This remarkable young lady gave an extremely powerful and moving speech about her own experiences of living with autism, mental health issues and psychosis.

Dr Jane Waite (Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham)

Jane looked at how to spot the signs of anxiety disorders and effective interventions.

Dr James Cusack (Autistica)

James provided an update on the research projects that the charity are currently funding into mental health in autism.

Professor Tasmin For and Dr Astrid Janssens (University of Exeter Medical School)

Tasmin and Astrid gave details of a new project focusing on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services which will use national surveillance, qualitative and mapping studies.

At the end of each of the sessions the Conference Chair, Professor Stuart Logan (Cerebra Professor of Paediatric Epidemiology, PenCRU at the University of Exeter), fielded questions from delegates which gave them the opportunity to clarify matters arising from the presentations. The speakers were able to answer these questions clearly and make the subject matter understandable.

You can watch the Q&A sessions here.

Additionally there were a number of exhibitors at the Conference who included Leigh Day, Hyphen Law, Tomcat, A Stitch Different, The Clarity Partnership, Autistica and The Challenging Behaviour Foundation. Alongside these there were information stands for our Academic Chairs at: University of Birmingham, Cerebra Innovation Centre, University of Exeter, University of Leeds and University of Warwick. Information was also available regarding our Family Research Ambassadors Projects.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day. We are particularly grateful to have received sponsorship from:

  • Leigh Day
  • Foot Anstey
  • Hobbs Rehabilitation
  • Lyons Davisdon
  • Hyphen Law
  • Tomcat
  • Autistica
  • The Challenging Behaviour Foundation
  • A Stitch Different Community Group
  • The Clarity Partnership

Why we’re Sleep Walking for Cerebra

Tracy Elliott

Tracy Elliott

Tracy Elliott, Head of Research at Cerebra, explains why she and her family are taking part in our Sleep Walk on 23rd July.

“Sleep, or lack of, is an issue most new parents face. We were no exception. Only our daughter, unknown to us at the time, had an Autistic Spectrum Disorder. We spent many hours walking up and down our hallway in the middle of the night trying to get our beautiful new daughter to sleep – nothing worked. We sought help, standard sleep management techniques did not work. Sleep deprivation continued.

Now as Head of Research for Cerebra I’m pleased to support research into sleep disorders. We know sleep disorders are common, different in nature and problematic for children and families living with Autism, intellectual disability, Angleman or Smith-Magenis syndromes. Cerebra funded research will help everyone understand why these problems occur and what can be done to help.

Mair Elliott

Mair Elliott

Nineteen years on we are walking up Pen Y Fan at night to replicate our early night walking experience and to raise awareness of, and money for, this important sleep research”.

Tracy, Geoff and Mair Elliott

You can help Tracy Elliott raise money for this great cause by donating directly to her fundraising page.

Research into Sleep Disorders is being carried out by the Cerebra Centre for Neurodevelopmental Disorders at Birmingham University.

Calling all Carmarthen Quizzers – Round 2!

Cerebra are preparing to hold our second quiz evening following the huge success of last year’s event.

We are once again asking the people of Carmarthenshire “are you Carmarthen’s smartest?” with rounds of questions covering favourites such as music, sport and current affairs.

The quiz will take place at Carmarthen Town AFC’s Clubhouse, Richmond Park on Thursday 9th June 2016. Teams will be pitted against each other to win the title of “Carmarthen’s Smartest”, as well as a cash prize of £300 – oh, and the chance to win our coveted trophy!

There will be eight rounds in total covering a range of subjects, as well as a few other fun rounds, so there will be something to suit everyone no matter what your specialist subject is!

We invite teams with up to a maximum of five members to take part but if there are more than five of you, don’t worry. We have plenty of spaces so you can just play against each other!

As well as the main event, there will also be a raffle and auction with some fabulous prizes on offer.

The entry fee is just £50 per team and this includes a lovely pie and mash supper from Hughes the Butcher, St Clears. There is also a fully licensed bar on site, should you need some encouragement!

All proceeds from the evening will come directly to Cerebra so get involved to help raise money to support children with brain conditions.

Booking is essential so to get your team involved please get in touch on 01267 244222, email jessicat@cerebra.org.uk or fill out the form on our “What’s On” page.

Strictly Come… Tea Dancing!

Due to unforeseen circumstances, we have been forced to postpone this event. Thank you for your interest.

On Friday 18th March Cerebra will be holding its first ever Tea Dance at St Mary’s Church Hall in Carmarthen.

We have enlisted the help of Pam Hopkins from Ultimate Ballroom who will be offering one-to-one tuition in a variety of dancing styles including Ballroom and Latin.

If you have never danced before, don’t worry! Pam’s hands-on tuition means that it will be a fun event for anyone of any ability.

There will also be refreshments on hand for when you work up a sweat dancing!

The event will start at 2pm and go on until 4pm.

Tickets are £10 with all of the proceeds coming to Cerebra.

If you would like further information about this exciting event, please contact Jessica Thomas on 01267 244222 or jessicat@cerebra.org.uk or use the contact form below.

 

Bristol Sleep Event Answers Parent’s Sleep Issues

Catherine Stone gives a sleep presentation

Catherine Stone gives a sleep presentation

We recently held a sleep advice event for parent/ carers of disabled children in association with Contact a Family in Bristol.

As charities supporting families of children with additional needs we know that it can be much more difficult for children with learning and sensory differences to maintain a healthy sleep routine.  We work to support parents and carers who are often desperate for more information and guidance at what is a very challenging time in their lives.

A total of 28 parents were able to benefit from the workshop event. One of Cerebra’s Sleep Practitioners, Catherine Stone, gave a presentation on taking a step by step approach to understanding what we know about sleep and how to support a better nights sleep for children who have additional needs. A lunch was provided which allowed the group to share their own information and experiences as well as access advice and support from Sarah King from Contact A Family and Kath Fryer, Cerebra’s Regional Officer for Bristol.

Feedback from the event was positive. One parent said: ‘I’m not alone as I met someone with the same condition as my son.’

Another Mum said the day had helped her to feel ‘Nurtured – very welcoming presenters, a lovely lunch and time for me’.

As well as running workshops, Cerebra’s Sleep Advice Service can offer ongoing advice and support to local families experiencing challenges where their child either has a learning or developmental delay, or if they have a neurological disorder.  Catherine Stone works closely with the Specialist Children Centres in Bristol and runs regular advice clinics for parents as part of this valuable service.

Many thanks to SENSE Woodside Family Centre in Kingswood for hosting the day.

You can find more information about our Sleep Service on our website.

Families Join us for Hop Skip and Jump Play Day

Kath Fryer, Regional Officer for Bristol organised a successful Stay & Play Fun Day on Sunday 7th February for Cerebra members.

Thirty-five children and their families were able to come along, meet one another, share experiences and access advice and information at Hop Skip and Jump, a purpose built play centre for children who have additional needs.

Many families had not been before and their children had a great time exploring the music room, two sensory rooms, soft play area,  two ball pits,  and wide open spaces that the venue had to offer.  Children and their families were invited to stay and sample food and refreshments from the free cafe on the day and volunteers Melissa and Adam were on hand to offer amazing support.

Cerebra brought along Reflexology Therapist Sue Morgan who worked tirelessly to offer massage taster sessions to these well deserving Mums and Dads.

We were also able to fund Animal Assisted Therapy for the children who came along.  Therapists from ‘Sensory Heaven’ in Bristol brought along Arthur the rabbit and his guinea pig friends for cuddles on what turned out to be a particularly rainy Sunday! The children were guided to interact with the animals at their own pace according to their particular needs. Therapists at Sensory Heaven are Makaton trained and several children with communication needs enjoyed learning new signs for ‘rabbit’ and ‘guinea pig’.

Kath Fryer said: “The room where the Animal Assisted Therapy took place was so calm and magical. Children who find it harder to focus and concentrate because of their needs were completely relaxed and absorbed in the moment as they held the animals.”

Feedback from the event was positive. Comments included: ‘Thank you very much for a lovely family day! It made our Sunday very special. I enjoyed a foot massage and the children loved animal therapy!”

Another Mum described the day as: “safe, welcoming, understanding.”

Another said: “Thank you for giving us the opportunity to explore this place.  Knowing that there are places which I can take my child… to play with a range of things which he can learn from, be himself and not having other people judge him.”

We would like to thank the team at Hop Skip & Jump for enabling us to open this amazing venue on a Sunday when it is usually closed and Contact A Family who provided their local rep, Sarah King to offer additional information and resources that can help parent carers with the day to day challenges they come up against.

Families Enjoy Cardigan Pantomime Trip

On 21st December 2015 Cerebra treated 55 lucky children and parents to an afternoon at the pantomime, organised by Regional Officer David Williams.

Families went to Theatr Mwldan in Cardigan to watch the production of Cinderalla.

As well as their admission tickets Cerebra provided free interval ice creams for everybody to help make sure they enjoyed their day!

Families came from as far afield as Neath and Milford Haven to enjoy the event and everyone had a good time with Cerebra families occupying a third of the auditorium and providing most of the audience participation! This was particularly pleasing as the weather was awful and one of the main roads to Cardigan was closed due to flooding.

Parents were very pleased with the day out with families saying: ‘our family all enjoyed a fantastic start to the Christmas holidays’ and ‘thank you for a wonderful day, it was well worth the journey’.

It was great to see everyone enjoying themselves and was a very enjoyable end to the year. David is looking forward to next year’s trip when hopefully another group of families can have a fun and relaxing day out at the Pantomime!

Events – January 2016

EventsAll you need to know about personal budgets
A workshop for parents and carers of children and young people who have an Education, Health and Care (EHC) Plan.  Stockport, 22 February. (In Control, with the Seashell Trust).

Up Down Man
Production of a play by Brendan Murray, running at the Salisbury Playhouse from 24 February to 12 March 2016, about “the question that faces every parent of an adult with a learning disability…. What will happen if I’m not here?” 

Kidz to Adultz In the Middle
Additional needs resources and information, exhibition and event, Coventry, 10 March. (Disabled Living).

The Education Show
Event showcasing learning resources. NEC Birmingham, 17 – 19 March. (i2i).

British Library Family Programme
Information about free children’s events at the British Library, London.

Run for Cerebra – December

 

santa in the citySanta in the City 5K Fun Run
Sunday 3rd December
 2017
City of London
Join Santa in the City this Christmas for a charity fun run with a difference. You will become Santa with a red suit and white beard and run with 2000 other Santa’s through the streets of the City of London and along the Thames to The Tower of London finishing back in the heart of the city in Paternoster Square. Start time is 10am at St Paul’s Cathedral. From Paul’s walk you cross the Millennium Bridge to Tate Modern and pass the Globe before crossing back over the Thames on Southwark Bridge. Then it s along the Thames to Tower of London and then Tower Hill where you will then make your way back through the city to finish adjacent t St Paul’s on Paternoster Square. The distance is 5km making it suitable for all abilities and adults running, jogging or walking with children.

  • Registration fee: £10.00
  • Minimum pledge: £25.00
  • Number of places available: 5
  • More information: https://www.209events.com/uk-running-events/santa_in_the_city
  • Book your place here

 

london santa runLondon Santa Fun Run 5K
Saturday 9th December
 2017
Battersea Park
Put runners in fancy dress and suddenly a run around the park becomes 10 times more fun! This is definitely the case with the annual London Santa Run! Join 2,000 others Santa’s in our annual ‘Red & White’ bearded charge around Battersea Park in this 6k festive fun run. The Battersea Santa Run is now a long standing community event that welcomes runners, walkers and children to enjoy the festive fun.

  • Registration fee: £10.00
  • Minimum pledge: £25.00
  • Number of places available: 5
  • More information: https://www.209events.com/uk-running-events/london-santa-run-battersea-park
  • Book your place here

Is there a Santa Run in your area? Why not run for Cerebra!