WHAT WE DO

Every bit of fundraising that The Eden Dora Trust does and our supporters  – helps us to achieve our goal of raising awareness of what Childhood Encephalitis really is. Enabling us to be there for children and their families when they need it most.

 

The funds that you raise are crucial for children & families affected by Encephalitis and Acquired Brain Injury (ABI) – they don’t just allow us to fund the things listed below – but allows us to continue to be on hand 24/7 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.

Your donations are funding vital:

 

    Research      •    Education          Information      •    Support

Our ‘Getting to Know Childhood Encephalitis Handbook’

We have now published our ‘Getting to Know Childhood Encephalitis’ Handbook – 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 order yours, or find out more please email contact@edendoratrust.org 

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 help or information, email: help@edendoratrust.org 

Childhood Encephalitis Study Day for Professionals

On the 28th February 2019, the EDT Childhood Encephalitis Study Day will be taking place at Irwin Mitchell Sheffield. The day is 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 is 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 hope the event will raise awareness of childhood encephalitis and share learning from clinical, educational, legal and personal experiences. Guest speakers will deliver 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 include:

  • 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
  • A&E Consultant – TBA
  • Occupational Therapy Expert – Laura Kelly  – Nottingham  University Hospitals NHS trust
  • Legal perspective – TBA

You Can Book Your Place Here!

Guidance for the Post-Discharge Rehabilitation of Children, Adolescents and Young Adults with Acquired Brain Injury

Launched 27th September 2018, 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

UCABI Workshops for Professionals

        Each year we fund desperately needed, hands-on workshops for all professionals that work with children with an Acquired Brain Injury. A key workshop that we fund, run by CBIT, takes place in every region in the UK: It’s a One Day Learning Workshop called “UCABI” (Understanding Childhood Acquired Brain Injury) aimed at helping any professionals – such as teachers – begin to truly understand a child with an ABI – and has been shown to be invaluably helpful and positive for both professionals, and the children they care for / work with.

If you feel that you or your organisation could benefit from this workshop, please click here to book your place

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 Residential Family Weekend (activities, care package, salaries, overheads – based on 30 young people +1 adult expenses) – For families / carers, younger children and siblings to all share their experiences and bond with one another. A weekend away like this is invaluable for children and families affected by Encephalitis, helping them to feel less isolated and alone.