Helping people with locked-in syndrome to live their best possible lives


Here are the key objectives we will provide as a charity to people with locked-in syndrome:


(a) Providing information and advice to support people with locked-in syndrome, their family members, carers and relevant professionals.

Howard has a wealth of experience with the challenges involved in living with locked-in syndrome. From day to day living to occasional barriers, and from physical obstacles to mental ones. He is willing to offer both verbal and written support to anyone who may need or want it.  


(b) Providing and assisting with the purchase of specialist equipment, by making grants available to people with locked-in syndrome.

The equipment needed by someone with locked-in syndrome is bespoke, and must be tailored to the specific individuals needs and often size in many cases. We would help this to happen. Examples could include a stand frame, eye-gaze communication resources and physiotherapy aids.


(c) Assist in providing information on the advancement of the equipment provided by the NHS in the UK to people with locked-in syndrome.

Coming to terms with, and adjusting to living with locked-in syndrome is a huge task for anyone. We want to keep everyone informed about what the NHS can provide people with locked-in syndrome to ease some of the pressure. 


(d) Providing access or assisting in access for people with locked-in syndrome to go on holiday by making grants available.

Travelling both for and with someone with locked-in syndrome can be a daunting prospect, and one which we offer support with. We will help people with locked-in syndrome to travel to destinations they may not otherwise be able to access, for monetary or accessibility reasons.