How we help

Our work focuses on:

• Raising awareness of hydrocephalus: we do this by issuing targeted information to front-line health professionals such as health visitors, GPs and support workers. All too often families tell us that they ‘knew something was very wrong’, but proving it was difficult.
• Funding research and training: since founding the charity, we have been shocked by the lack of research into treatment options for the condition. Our dream would be to cure hydrocephalus but, realistically, funding research that works towards improved treatment options is the best way that we can help at present.
• We also know that many front-line professionals, who work with children with hydrocephalus, struggle to access funding to support their learning and development. To us it’s clear that, if you don’t invest in those who provide the care, it’s hard to improve the outcome. We therefore provide grants and bursaries to anyone who can show how improving their learning will benefit children with hydrocephalus.

• Signposting support: as a parent-led charity, we know how important it is to speak to other families. We provide peer-to-peer support and direct families affected by the condition to organisations that can offer support, advice and guidance. It often takes just one Mum, Dad, friend or Grandma to say “I know how you feel” or “been there”, to make life seem that bit clearer.