PEOPLE with the lifelong disabilities of spina bifida and hydrocephalus are to benefit from a a £250,000 grant from the Big Lottery.
The Association for Spina Bifida and Hydrocephalus (ASBAH) has been awarded a four-year grant to develop a membership scheme that will see disabled people playing a much more significant part in the development of the 46 year-old charity.
The grant will also help in funding a national Membership Development Officer who will enhance communication between members and the teams that support them.
Members will have a greater say in what they need, as well as the capacity to influence how they would like to see the charity develop and to play a major role in that development.
Through the creation of peer support groups at local level it is intended that there will be an increase in the number of social opportunities for members who often experience loneliness and isolation.
The scheme will also include the promotion of online forums and the development of an Adult Members Council, a group which is run by and for adults with spina bifida and hydrocephalus.
Chief Executive Jackie Bland said the grant will be a key stepping stone in the charity’s progress.
“In gaining this grant we will be able to significantly enhance our support to people with spina bifida and hydrocephalus.
“As an organisation focused on a communicative and interactive membership we will be able to learn more about the people we support and thus make greater strides towards meeting their needs and aspirations.
“The creation of such a membership has not been possible to date, but with the Big Lottery grant we can finally realize this aim.”
SPINA BIFIDA occurs very early in pregnancy when the spine and brain are being formed. It is a fault in the development of the spine, which fails to close properly.
Spina Bifida often results in paralysis below the fault resulting in severe disability.
A major secondary complication of Spina Bifida is Hydrocephalus is excess fluid pressure in the brain, which can cause brain damage if not treated promptly.
Hydrocephalus can also occur at any time of life, for other reasons, including meningitis, premature birth, stroke or tumours.
