North Wales Local Association

In the 1960s parents of children with spina bifida and/or hydrocephalus were meeting at clinics up and down the country and saw that if there was no one outside the medical world who could also help them, then they'd better do it themselves.

The North Wales Association for Spina Bifida and Hydrocephalus was started in 1967 as a result of the concerns of parents for children with spina bifida and/or hydrocephalus to have the right information about spina bifida and/or hydrocephalus and for there to be adequate health, social care, education and employment provision as well as better disability access. These parents also wanted to provide emotional support and financial assistance where hardship arose as the result of disability but where the particular need fell outside of the responsibility of the statutory agencies.

I first became involved with the association in 1977 after moving to the area from Birmingham. I'm just one of five committee members who have spina bifida and/or hydrocephalus, the others being Huw Griffith, David Hallows, Barbara Leach and Diane Salisbury. Parents are represented on the committee by Val Conwy, Marie and Trevor Edwards, Pam Hall and Jennifer Hayes. The remaining committee members are Arthur Todd, who is our Chair, and Adrian Jones.

We have 240 members. Last year £15,000 was raised through store collections, sponsored walks,

the One Hundred Club, individual donations and grants from local councils. In turn the association distributed £5,500 in grants in 2003.

To help with all this we have a partnership arrangement with ASBAH's regional office in Bangor which includes providing administrative support, as the association stopped employing staff last May. We enjoy extremely positive relationships with ASBAH, primarily through Elin Ifan, ASBAH's Regional Manager in Wales. Elin attends the executive meetings as often as she can, as do the area advisers Jill Bartlett and Peter Bennett.

Proof of this positive relationship is that I'm currently Chair of ASBAH yn CYMRU - ASBAH in Wales. This provides regular opportunities to meet with Andrew Russell and his senior team and I believe that we do make a difference in being able to reflect the grass roots view of our experience of disability and the ways in which ASBAH's services and influence impact upon them.

Vice-chairman Michael Mason