Research Support Network

Can you help us to make a difference?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, sibling or as a young person directly affected.

By listening to those that make up our Research Support Network, we can decide which research to fund that will uncover the knowledge they want to help them overcome challenges. 

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

• 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 decisions on awarding grants. 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. 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]

Members of the network are key to helping us understand and decide which research to fund.

Further Information

Research Support Network Code of Practice

Research Support Network Terms of Reference

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