We invited one of the world’s outstanding thinkers, Professor Steven Hawking CH, CBE, FRS, to be our Patron, and he willingly accepted. Professor Hawking continues to be our Patron, and he is on record as saying: “Whilst many children are kept in hospital initially, it is the families who care for sufferers at home that find their lives, home and life plans all having to be reassessed. it is at this time you need to be able to make contact with families in similar circumstances to gain support, and knowledge of how to handle situations.”
Click play to hear a personal message from our patron Professor Stephen Hawking
Publication of two booklets for parents and families with young people on LTV: the first intended to help steer them through the initial period of hospitalization; the second, which is intended to be read in sequel, is aimed at providing support and guidance in managing the unique challenges involved in caring for a young person on LTV after they leave hospital. Click here to view booklets
- Establishing and developing an inter-active website.
- Instigating a “Find a Family” programme to help trace and support affected families, and to develop a database for communication and research.
- Starting a programme to develop a regional network of family support officers, also involving a fully-serviced Helpline.
- Identifying and liaising with sources that provide week end a holiday respite care for both parents and children.
- Drawing social and political attention to the social, emotional, and economic needs of this growing but much ignored minority group.