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Advice, Support and Information – A Family Story

“Our son J is three years old. He’s a little firecracker with a vibrant personality and he loves to play with toy cars, trains, planes, rockets, duplo and puzzles. He also loves water play so washing hands turns into lots of fun with water everywhere! J is autistic and has sensory processing difficulties. He has also been diagnosed with ARFID which means he does not ...
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Practical approaches to resolving commonly occurring health and social care difficulties

John Furlong and Derek Tilley work within our Legal Entitlements and Problem-solving Project. They help families to understand what their legal rights are and what they can do if they fail to get the support they need. In this article Derek and John suggest some practical approaches to resolving commonly occurring health and social care difficulties. Get support Having support can be one of the ...
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School transport, Cerebra help with families of children with brain conditions.

Accessing School Transport for Disabled Children – Progress

Local authorities have a duty to make travel arrangements for all eligible children. Cases referred to our Legal Entitlements and Problem-Solving Project (LEaP) have revealed common problems experienced by families in accessing school transport. Carys Hughes, LEaP Project Co-ordinator, reviews the progress the project has made to effect policy change, highlights the main issues and what we’ve learned about addressing common problems. What have we ...
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positive family connections

Positive Family Connections – Latest News

Positive Family Connections is a new online 6 week programme for families who have a child with additional developmental needs (learning disability, autism, or both) aged between 8-13. Daniel Sutherland, a Cerebra funded PhD student working on the project, gives us a quick update on progress: https://youtube.com/shorts/yZS4drYjPx0?feature=share The project's aim is to enhance positive connections between family members. Our relationships with those closest to us ...
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Cerebra the charity for children with brain conditions-research work

The Health, Healthcare And Wellbeing Of Adults With Intellectual Disabilities

Tammy Rutter The dedication of Professor Mary McCarron and her team to inclusive research which brings about meaningful change for people with intellectual disabilities was evident throughout her CEDAR seminar series talk about IDS-TILDA. IDS-TILDA, a programme of research led by Professor McCarron at Trinity College Dublin, is the Intellectual Disability Supplement of the Irish Longitudinal Study on Aging. Now preparing for its fifth wave ...
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Little girl with paint on her hands.

Introducing Cerebra PhD Student Lauren Jenner

Lauren Jenner is a PhD student at the University of Surrey using novel methodologies to understand social abilities and autism in Prader-Willi syndrome and Down syndrome. I am currently in the third year of my PhD, funded by Cerebra. My research is on social abilities and autism characteristics in Prader-Willi syndrome (PWS), Down syndrome (DS) and non-syndromic autism (AUT). From October 2021 – January 2023, ...
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Privacy Policy

Privacy Policy This policy and our Cookies Policy sets out how Cerebra – For Brain Injured Children and Young People, uses and protects your personal information, including data from your use of our website. Cerebra is the Data Controller for personal data about families we help, professionals, supporters, event attendees, grant applicants, volunteers and newsletter subscribers. For the purpose of this document we will use the ...
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Introducing Cerebra PhD Student Jessica Mingins

Jessica Mingins is a PhD student at Aston University, her Cerebra funded research is improving our understanding and assessment of anxiety in people with Fragile X syndrome and Cornelia de Lange syndrome. My PhD is focused on mental health in rare genetic syndromes associated with intellectual disability. Primarily, my focus is on assessment of anxiety and factors associated with anxiety in Fragile X Syndrome and ...
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Lifestyle Interventions in Pregnancy

Most women thinking about having a baby know that they need to make lifestyle changes before and while they are pregnant for a safe and healthy pregnancy. They ask their doctor or midwife for recommendations about caffeine intake, exercise, alcohol consumption, the best foods to eat and what to avoid, and are particularly receptive to changing their health behaviour1. Many researchers have sought to establish ...
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Teddy with his oxy-gem

Teddy is Going Places with his Oxy-gem!

Teddy was born healthy and well, although he suffered with what we thought was terrible reflux. When he was a year old I noticed he wasn’t breathing correctly, our local hospital couldn’t work out what was wrong and he was referred to a specialist team in London. After many tests a CT scan revealed that he had a very rare form of children’s interstitial lung ...
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