General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  

In 2014, Yanna, Neil’s daughter was diagnosed with CLN2 Batten Disease and within a short period of time Neil and his family relocated to Rome to join a Clinical Trial sponsored by BioMarin who were developing the drug, Brineura©.

When they returned to the UK in 2016, Neil took over a Befriending service through the disability charity, Scope, which aimed to provide emotional support to parent carers of disabled children. After coordinating the service based in East London, Neil continued to work across Tower Hamlets and Newham, testing a variety of community development approaches and ways of working that focused on partnership between family caregivers and professionals within Health, Education and Social Care.

Neil has since worked in a variety of settings and continues to run participatory events both nationally and locally, always with a focus on personalised care and proactive support.  A key part of Neil’s work is around creating a space where Family Caregivers and professionals can associate with each other and where they are able to provide mutual support in order to develop healthy relationships that work.

Neil is currently Digital Programmes Manager for I Support Behaviour, a provider of Positive Behaviour Support, where behavioural science is used to help support people with autism and/or a learning disability to remain in their community and live meaningful lives with their family and friends.

And Yanna,10, which is where Neil’s story always begins, is happy, goes to school and enjoys collecting Peppa Pig books with her dad.

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.