Every bit of fundraising The Eden Dora Trust and our supporters do helps us to achieve our main goals: being there with lived experience to personally support children and their families when they need it most from diagnoses and beyond; raising awareness of Childhood Encephalitis and Acquired Brain Injury; undertaking research; developing resources for schools, healthcare, and training; dedicated helpline and much more
- HOME
- ABOUT US
- WHAT WE DO
- ENCEPHALITIS
- HOW TO HELP
- RESOURCES
- ABI School Award
- Eden Dora Trust Study Morning 2021
- ‘ABI Return: Guiding the Return to Education’ Booklet
- ‘Understanding Childhood ABI’ Workshops
- Cognitive, Emotional, Behavioural, & Social Impacts
- EHCP Guide
- Understanding Lasting Powers of Attorney
- ‘Getting To Know Childhood Encephalitis’ Booklet
- Encephalitis Information Leaflet
- Returning to Education
- Returning to School During COVID-19
- Paediatric ABI Rehab Toolbox
- Sleep Deprivation
- The EDT Study Day Highlights
- More resources from other organisations
- SHOP
- CONTACT
WHAT WE DO
The funds you raise means we can continue to be a lifeline for families navigating Encephalitis and Acquired Brain Injury(ABI). Beyond supporting the projects listed below, your support also allow us to continue to be on hand to help anyone who reaches out to us for support or information. We visit children and families anywhere in the UK in hospitals, at their homes, in schools, or simply at the other end of a phone call, whenever we are needed.
We couldn’t do any of these things without your support. View our extensive set of free resources here.
Your donations are funding vital:
• Research • Education • Information • Support
‘ABI Return: Guiding the Return to Education’ Booklet from N-ABLES
We are proud to have helped fund a brilliant new resource from the National ABI Education and Learning Syndicate (N-ABLES)
The booklet is free-to-access and will help professionals involved in supporting children and young people with an Acquired Brain Injury to prepare for, and achieve, a successful return to education and to help progress their recovery.
The Eden Dora Trust are thrilled to be an active member of the N-ABLES group, who were set up as a result of the recommendations made in the All-Party Parliamentary Group for Acquired Brain Injury’s recently-published Time for Change report.
The group works to identify ways to support all education professionals in gaining a minimum level of awareness and understanding about Acquired Brain Injury and the educational requirements of children and young people with this condition. To find out more about N-ABLES, please read more here.
The ABI Aware School Award
Most children affected by ABI return to mainstream education, as school is where the majority of re-learning takes place. This means it’s essential that educators are as well-prepared and well-equipped as possible. Funded by the Eden Dora Trust and produced collaboratively with The Child Brain Injury Trust, The ABI Aware School Award aims to tackle this.
This invaluable new initiative will work with schools and academies to help them develop their knowledge and understanding of ABI, allowing them to provide the best possible environmentand educational setting for children with ABIs, and showing parents where the best possible choices for their child are.
We launched this vital initiative in April 2021, and if you would like more information on this amazing new project, please do not hesitate to contact us.
Our Encephalitis + ABI Study Morning
We had a great turnout of attendees for the virtual return of our EDT Study Morning. We hosted a panel of amazing professional experts and discussed how we can proactively help and support children and families with Acquired Brain Injury (ABI) after Encephalitis.
As it has always been in previous years, the morning was an incredibly worthwhile experience for all those who attended, and covered many topics relating to ABI and life after Encephalitis, discussing how we can proactively help and support children and families. For instance:
- Supporting children and young people after discharge from hospital
- Returning to education post Encephalitis and ABI
- Sleep-wake disorders following ABI, including a review of the prevalence and phenotypes, and their associations with injury characteristics, impact on recovery, strategies for treatment and ideas for future research
- A child’s world after Encephalitis and ABI.
Our speakers on the day included:
- Dr Emily Bennett (Consultant Clinical Psychologist)
- Dr Emily Talbot (Consultant Clinical Psychologist)
- Dr Heather Elphick (Consultant in Paediatric Respiratory and Sleep Medicine)
- Beth Wicks (Education consultant and chair of IPBIS)
- Dr Santosh Mordekar (Consultant Paediatric Neurologist)
If you couldn’t attend our study morning on the day and would like to experience the talks first-hand, or if you did attend and want to revisit the content, then we have made the recording of the full session available to watch for free on our Eden Dora Trust YouTube channel!
You can watch the event below, and why not subscribe and check out the other videos on our channel while you’re there – we have lots of content covering Encephalitis, ABI, and lots of our other previous events.
On 6th May 2021 we had a great turnout of attendees for the virtual return of our EDT Study Morning. We hosted a panel of amazing professional experts and discussed how we can proactively help and support children and families with Acquired Brain Injury (ABI) after Encephalitis.
As it has always been in previous years, the morning was an incredibly worthwhile experience for all those who attended, and covered many topics relating to ABI and life after Encephalitis, discussing how we can proactively help and support children and families. For instance:
- Supporting children and young people after discharge from hospital
- Returning to education post Encephalitis and ABI
- Sleep-wake disorders following ABI, including a review of the prevalence and phenotypes, and their associations with injury characteristics, impact on recovery, strategies for treatment and ideas for future research
- A child’s world after Encephalitis and ABI.
Our speakers on the day included:
- Dr Emily Bennett (Consultant Clinical Psychologist)
- Dr Emily Talbot (Consultant Clinical Psychologist)
- Dr Heather Elphick (Consultant in Paediatric Respiratory and Sleep Medicine)
- Beth Wicks (Education consultant and chair of IPBIS)
- Dr Santosh Mordekar (Consultant Paediatric Neurologist)
If you couldn’t attend our study morning on the day and would like to experience the talks first-hand, or if you did attend and want to revisit the content, then we have made the recording of the full session available to watch for free on our Eden Dora Trust YouTube channel!
You can watch the event below, and why not subscribe and check out the other videos on our channel while you’re there – we have lots of content covering Encephalitis, ABI, and lots of our other previous events.
Our ‘Getting to Know Childhood Encephalitis’ Guidebook
We have now published our ‘Getting to Know Childhood Encephalitis’ Guidebook – an incredibly helpful and detailed book describing absolutely everything one could need to know about Childhood Encephalitis and every step you can take following a diagnosis.
To download yours for free click here, or to order hard copies for your school or surgery please email contact@edendoratrust.org.
‘Understanding Childhood Acquired Brain Injury’ Workshops for Professionals
Each year we fund a series of vital hands-on workshops for professionals who work with children with an Acquired Brain Injury. The workshop is run by the Child Brain Injury Trust, and are held both online and in person. The experience is titled ‘Understanding Childhood Acquired Brain Injury’ and is an unbeatable, CPD-certified, training experience for any professional wanting to know more about childhood ABI. There is very little awareness or understanding of ABI in many professional communities, as it is not typically covered by any basic teacher training, even for Special Educational Needs Staff. The workshop is truly invaluable for both professionals and the children they care for/work with. If you feel that you or your organisation could benefit from this workshop, you can find out more here!
Supporting Families From The First Moment
We are always there to support families who have just received a diagnosis of Encephalitis in hospital, helping them through their discharge and providing invaluable help and advice with their next steps in their child’s rehabilitation. If you would like any help or information, please email: help@edendoratrust.org
Guidance for the Post-Discharge Rehabilitation of Children, Adolescents and Young Adults with Acquired Brain Injury
Funded by The Eden Dora Trust, and produced together with The IPBIS (International Pediatric Brain Injury Society), we have produced a ‘Toolbox’ that contains an overview of a wide range of tools and programmes available for use by health professionals across the world. This is an incredible step towards a future in which Children and Young People with an Acquired Brain Injury will have access to effective and thorough rehabilitation – worldwide. The majority of the Toolbox contents are free to use, with web addresses and/or contact details provided so that further information can be obtained. To access the Toolbox, you can click on this ToolBox Link
Childhood Encephalitis Study Day for Professionals
The Eden Dora Trust Childhood Encephalitis Study Day took place at Irwin Mitchell Sheffield. The day was aimed at helping all medical, rehab and educational professionals to understand more about the diagnosis of Childhood Encephalitis, its impact and rehabilitation. Working in collaboration with the Sheffield Children’s NHS Foundation Trust and Irwin Mitchell, the focus of the day was to consider the impact of early diagnosis, treatment and rehabilitation of children with encephalitis and the longer-term impact for the child and family from a medical, legal and educational perspective. We also hoped the event would aid in raising awareness of childhood encephalitis and share learning from clinical, educational, legal and personal experiences. Guest speakers delivered talks on a wide range of topics related to childhood encephalitis from the acute stage through to treatment, support required during recovery and the long term support that may be needed. Speakers on the day included:
- Dr Chris Rittey – Consultant Paediatric Neurologist, Sheffield Children’s Hospital
- Dr Santosh Mordekar – Consultant Paediatric Neurologist, Sheffield Children’s Hospital
- Petrina Sill – Parent’s perspective, Founder and CEO of The Eden Dora Trust
- Dr Mike Patterson – Principle Clinical Psychologist, Sheffield Children’s Hospital and Dr Emily Talbot – Consultant Clinical Psychologist in paediatric Neuropsychology, at Nottingham University Hospitals NHS Trust
- Dr Sharma – Paediatric Neuro-Rehab Consultant
- Occupational Therapy Expert – Laura Kelly – Nottingham University Hospitals NHS trust
The Professional’s Handbook
We have funded the production of an incredible guidebook for Children with Encephalitis that is designed specifically for professionals such as teachers, SENCOs, Educational Psychologists – to help them understand the effects that Encephalitis has on Children and their families. It’s a truly amazing and invaluable resource.
Residential Family Weekend
Your donations allowed us to help fund a brilliant Residential Family Weekend for families, carers, younger children and siblings to all share their experiences and bond with one another. A weekend away like this is truly invaluable for children and families affected by Encephalitis, helping them to feel less isolated and alone.
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