The Neurofibromatosis Association was established in 1981 by families with NF to help others. It became a registered charity in 1982 and a limited company in 2000. In September 2010 it changed its name to The Neuro Foundation. This is a working name for the charity, and the charity retains its legal name “The Neurofibromatosis Association”.
The charity’s vision is “To improve the lives of those affected by neurofibromatosis”.
In order for the charity to deliver its vision of helping to improve the lives of those affected by neurofibromatosis, it works in collaboration with the NCG funded service.
The mission for the charity is to “Enable people concerned about neurofibromatosis to find solutions appropriate to them”
The charity delivers its mission through five services to members, supporters and beneficiaries. It endeavours to :
- Inform – We provide accurate, relevant and up to date information that explains the conditions of NF1 and NF2, the implications, challenges and opportunities, in language understood by all.
- Advise – We provide practical and emotional advice to help people find the best services and support available. We enable people to make choices about how they approach and live with neurofibromatosis.
- Advocate – We aim to increase knowledge, awareness and understanding of NF, and will campaign for change in areas we believe will improve the lives of those affected by neurofibromatosis.
- Connect – We aim to take a pivotal role in bringing together groups of people interested in neurofibromatosis to maximise the support and information available to them.
- Fund – We seek to make funds available for small projects to bodies and patient groups where we believe it will make a difference.
The charity works with the following groups to achieve its mission:
- Families with neurofibromatosis
- The Medical community
- NF Specialist Advisors
- The research community (in particular the NF Medical Advisory Board)
- Other charities
The current focus is on two of the five services: Inform and Advise. This reflects the charity’s resources at present. The five-year aim is to deliver all services but this relies on the Charity returning to a period of growth.
Despite a difficult year The Neuro Foundation maintained its network of neurofibromatosis Specialist Advisors by agreeing to jointly fund, Peninsula Genetic service, an advisor based at the Royal Devon and Exeter NHS Foundation Trust and NCG.
The charity now funds a network of four Specialist Advisors across the country, based in Newcastle, Birmingham, Southampton and Plymouth. Each advisor reaches out to over 500 patients a year: through clinics, home visits, a schools advisory service and telephone consultations.