My Life

In 2012 we commissioned researchers from the University of York Social Policies Unit to talk to young adults (from 16 to 26) with A-T and their families about their lives, an experiences and aspirations. This project became known as My Life.My Life report

On the basis of their discussions, the University produced a report, which you can read here.

Bryony Beresford who led the porject said that the reserchers on her team had found this "one of the best projects they had ever worked on". She said that the focus of the discussions had been the young people’s lives, the things they did, their routines and what they looked forward to. They were keen to talk about the people who were important to them and the equipment and services that helped them to live their lives.

It is clear that the young people have aspirations. These include working, whether paid or as volunteers, accessing further education and training, living independently and widening their social circles. They show a keen interest in knowing what their peers are doing and in meeting up with people with similar interests and similar conditions.

However the report also identifiesa lot of barriers to their achieving their ambitions. These include problems with equipment, transport and services, rules about benefits, money, employer’s attitudes and so on. They also find it diifficult to get good information about what their options are.

In 2013 we invited all the young adults of the same age group to meet together to talk about the findings. A group of them came together in Milton Keynes to do this and this produced some  suggestions about how the Society can better support young adults with A-T to live their lives to the full.

Some of these proposals have already been put into action and the Board is discussing how best to implement some of the others.