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.
At that time, there was a single organisation in the USA raising funds for A-T research, but none which also offered support and information to people living with A-T.
As well as regular meetings of families, the A-T Society produced 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.
For much of its history, the A-T Society was run by volunteers, mostly family members of people with A-T. When there were just too many papers for kitchen and dining-room tables, 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 volunteers in the office. The team and office were managed by Maureen Poupard who acted as an unpaid, director.
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. From this starting point the UK National A-T Service was developed, involving the Specialist Centres at Nottingham and Papworth, the A-T Society and Professor Taylor’s laboratory at the University of Birmingham. This is a highly effective service, in which the A-T Society plays a central co-ordinating role.
In 2010, as Maureen wanted to step back from the Society and wanting to see the A-T Society develop in size and impact, the Board appointed its first Chief Executive, William Davis. Shortly after this, Suzanne Roynon was appointed as full-time Fundraising and Relationship Manager.
Since then, the Society has continued to grow in the level of its activities and income. We now have a family support team of two, who work closely with the 165 or so people with A-T and related conditions in the UK to provide information and practical support, as well as with others in Ireland and across the world. Our annual Family Days are attended by around 1/3 of all families and our regular activity weekends for adults with A-T are extremely poplular. We have a large social media following, and our research activities have a major international impact.
Over the years the A-T Society has invested nearly £2 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 2011 we established the International Clinical Research Network and in 2012 organised the highly-successful Clinical Research Conference in Cambridge as the first in an ongoing series of biannual A-T Clinical Research Conferences. The fourth of these will take place in Naples in November 2018.
In 2012, the A-T Society published the world’s first clinical guidance document on treating A-T in children. This has also been translated into French and distributed to French-speaking neurologists.
In 2016, the Society created the world’s first International A-T Patient Registry to gather clincal data on people with A-T.
The Society has always looked to work in partnership with other organisations that share our aims and we have very close working relationships with A-T and ataxia groups across the world, and with other rare-disease and umbrella organisations in the UK.
Looking ahead, we are planning a major project to address the emotional and psychological needs of people living with A-T and to support adults with A-T in taking control of their lives and living them as they wish to. We are also planning to increase the scale and impact of our research funding.