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Diagnostic Overshadowing Webinar Review

A recording of the webinar is now available at the end of this article if you’d like to catch up in full. Introduction Dr Jo Moss opened the webinar by placing our focus on the importance of prioritising the long term health and well-being of children and young people with a genetic condition associated with intellectual disability. Research has shown that having a genetic condition ...
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Mum with her daughter in a wheelchair

Research Journeys: Breaking down barriers: Access for all

"In identifying the barriers to disability rights implementation we can begin to understand why and how some services are accessible to some, but not others." Damarie Kalonzo     Read more on the University of Leeds website.
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James and Isabella

Double the Fun for our Next Cerebra Superhero!

We're very excited to welcome James to Team Cerebra! James will be taking on two running challenges to raise money for us; the Manchester to Liverpool Ultra Marathon and the London Landmarks Half Marathon just a week later! He has always loved fitness and saw this as a perfect opportunity to challenge himself as part of his 40th birthday celebrations. James told us why Cerebra ...
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Lifestyle interventions during pregnancy improves child neurodevelopment

Structured interventions during pregnancy, such as those centred on a Mediterranean diet or mindfulness-based stress reduction, can improve child neurodevelopment by the age of two, as demonstrated from the results of a randomized clinical trial carried out by researchers from BCNatal and funded by Cerebra published in the journal JAMA Network Open. The study, follows up on The Improving Mothers for a Better Prenatal Care ...
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Helping The Whole Family To Play Together

Our son Sam has Angelman Syndrome and needs assistance with all aspects of life. He is developmentally delayed, non-verbal, has mobility issues, cerebral vision impairment and epilepsy. Sam’s epilepsy is well controlled at present but he suffers from seizures when he is unwell. He has no sense of danger so needs constant supervision. Sam is an active, sociable 12 year old. He thrives on 1:1 ...
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Rhys Makes A Splash With Our Innovative Paddle Board

Teenager Rhys has a rare, progressive genetic condition which affects his extremities and his physical strength. While he has tried surfing, and enjoys it when the sea is calm, he finds that getting wet and cold is difficult for him. His mum, Adele, contacted our Innovation Centre to see if they could come up with a plan to help Rhys enjoy the ocean in a ...
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Books in the Library on Pathological Demand Avoidance

The library has been getting a lot of requests to borrow books on Pathological Demand Avoidance in recent months, so we thought you’d like to know what we currently have in our library. More and more books are being published all the time and we will be adding more in the future. Like all our books, our library members can borrow them from us for ...
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Sleeping boy

Struggling To Get To Sleep With Tourette Syndrome

Our Sleep Advice Service is there to help your child - and you - get a good night's sleep. In this post one mum explains the issues they were dealing with and how, even when you think you've exhausted all options, we are able to help. Tell us a bit about your son L is 11 years old and loves gaming, particularly FIFA and Roblox. ...
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A Good Night’s Sleep Has Transformed Our Family Life

“Annabelle loves being active - running, jumping, climbing, swinging etc. She also loves water, whether it be in a bath or the swimming pool. She is obsessed with Peppa Pig and loves watching it on the TV, listening to the songs and looking at the books. Annabelle dislikes new environments and sudden loud noises. She loves being outdoors in familiar settings. Annabelle has brain damage ...
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An early Christmas present for Henry

You may well remember, back in the spring, we told you all about Henry and the super-lightweight crutches our Innovation Centre made for him. The last time we met Henry (who is a huge Harry Potter fan), he was 9 and a ¼, but he’s now at that ‘magic’ 9 and ¾! Henry has Cerebral Palsy and wanted to spend much more time out of ...
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