Helping Harry's HAT raise awareness and provide support
Who are Harry's HAT?
Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was founded in 2018, by Harry’s family and friends in response to the need identified following Harry’s diagnosis with hydrocephalus (water on the brain). They became a registered charity in 2019.
Harry’s HAT are the only UK charity to focus solely on paediatric hydrocephalus and its impact. Their overall aim is to make life better for children with hydrocephalus, as well as for those who love and care for them. The charity has grown holistically based on need and input from other families who are also on the same journey.
What support does Harry's HAT provide?
Started with a three-fold aim of raising awareness, researching and providing support, the charity has grown.
The work the Harry’s HAT team do is extensive –
- Raising awareness of paediatric hydrocephalus
- Funding research and training for nurses and front-line workers to improve the outcome for children with the condition
- Connecting families affected by hydrocephalus in children
- Campaign for a better awareness of infant Head Circumference measurement as a key tool for identifying babies with the condition through the Get-A-Head campaign
- Supporting over 800 families living with hydrocephalus through the peer-to-peer Families Together programme; they provide resources to support a family at every stage
- Working to improve the guidance for children with hydrocephalus who may experiencing a shunt or ETV (Endoscopic Third Ventriculostomy) failure
- Recently launched the UK Paediatric Hydrocephalus Research Network with the aim of making sure the voice of the patient family remains at the heart of any research
Harry's HAT book
The charity also written a book which is given free of charge to every newly diagnosed family in the UK called “Hydrocephalus: what I wish I had known”, and are just about to release a second, “Hydrocephalus: starting school” and we now provide grants for families who have a child with hydrocephalus. The grant programme is open twice a year, subject to funds. You can find details of when the fund opens at their website.
CL Medilaw provides much needed support
Harry’s HAT is a very small charity, with just two part-time paid members of staff and a dedicated team of volunteers, yet they manage to provide so much help, guidance and support.
We are thrilled to be able to support Harry’s HAT to enable them to help more families whose lives have been touched by hydrocephalus.
