We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?
What is the Research Support Network?
Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.
We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.
What does it involve?
We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.
What will you actually do?
As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.
Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.
Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.
Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.
Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.
Are you eligible?
We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.
If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at [email protected]
We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.
Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.
Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.