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happy disabled boy painting with his family

Dr Joanna Griffin – Involving Family Carers in Research

My name is Dr Joanna Griffin and I am a parent carer, Counselling Psychologist, and an Assistant Professor in CEDAR, University of Warwick. About Me I have worked in many different clinical settings, including the NHS and several charities, over the last 20 years. Following the birth of my eldest son, who has cerebral palsy and a learning disability, I started to focus more on ...
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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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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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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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GoTo Seat

Families worldwide use their GoTo Seats in supermarket trolleys, on planes, swings and Granny’s dining chair. The GoTo seat makes daily tasks easier and means kids don’t need to miss out. It gives a little piece of independence that lets them see the world from a new perspective and feel they’re at the heart of the action. “Absolutely fantastic product! The GoTo seat is so ...
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Nappies

Our LEaP Project helps change the Welsh Government’s guidance on continence products

Have you been told that you can’t have more than 4 continence products a day, even if your child needs more? Read on to find out how to get the products you need. Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. Last year, we told you how we had ...
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Nappies

Our LEaP project helps Rhiannon get the continence supplies she needs

Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board. Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has ...
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