History of the Society
The A-T Society was formed in 1989 when Maureen Poupard, with the help of Professor Malcolm Taylor, wrote out to all the families that were known to be living with A-T and invited them to a meeting. At that time, there was very little information available about A-T and indeed very little was known about the disease.
The families that came to the meeting found the experience of meeting with others very helpful and decided to set up a proper support group. A year later, in 1990 the group registered as a charity and the A-T Society was born.
As well as regular meetings of families, the A-T Society had a newsletter to provide information about A-T as well as the charity and its activities. One of its key aims has always been to support research into A-T and from its earliest days, it gave grants for equipment and to fund researchers and research activities.
Over the years the A-T Society has invested getting on for £1 million in supporting research. In addition the Society and its members have worked closely with doctors and scientists, providing information and samples and participating in research projects which have helped make great strides in understanding A-T. In 2004 we supported Professor Malcolm Taylor in organising the world's first ever conference on Clinical Science in A-T.
In 1993, the A-T Society established a specialist multi-disciplinary A-T clinic at Nottingham City Hospital. This was the first A-T specialist clinic in the world and served as a model for other clinics set up later in other countries. In 2006 a second clinic was set up at Papworth hospital near Cambridge, specialising in respiratory problems in adults with A-T.
In 2009, the A-T Society celebrated its 20th Anniversary with a reception at the House of Lords, which was hosted by Lord Parkinson, whose wife, Ann, is a very active patron of the Society.
For most of its history, the A-T Society has been largely run by volunteers, mostly family members of people with A-T. In the early days, much of the administration was done from people’s kitchens. Eventually, however, there were just too many papers and an office was found in Harpenden.
As the A-T Society’s work grew steadily, first a fundraiser and then a family support worker were appointed to work alongside a number of volunteers in the office. The team and office were managed by Maureen who was effectively acting as a full-time, though unpaid, director.
In 2010, realising that this arrangement was not sustainable and at the same time wanting to see the A-T Society further increase the scale and effectiveness of its activities, the Board appointed its first Chief Executive, William Davis. Shortly after this, Suzanne Roynon was appointed as full-time Fundraising and Relationship Manager.
In 2011, Maureen announced that she wished to step down from the Board and a major recruitment exercise resulted in six new trustees joining the Board.
While the last year and half has therefore been a time of transition, we now find ourselves with a new and enthusiastic Board and staff team, looking ahead with an ambitious programme of work which they are keen to get on with.