The AT 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 AT and invited them to a meeting. At that time, there was very little information available about AT 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 AT Society was born.
At that time, there was a single organisation in the USA raising funds for AT research, but none which also offered support and information to people living with AT.
As well as regular meetings of families, the AT Society produced a newsletter to provide information about AT as well as the charity and its activities. One of its key aims has always been to support research into AT and from its earliest days, it gave grants for equipment and to fund researchers and research activities.
For much of its history, the AT Society was run by volunteers, mostly family members of people with AT. When there were just too many papers for kitchen and dining-room tables, an office was found in Harpenden.
As the AT 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 AT Society established a specialist multi-disciplinary AT clinic at Nottingham City Hospital. This was the first AT 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 AT. From this starting point the UK National AT Service was developed, involving the Specialist Centres at Nottingham and Papworth, the AT Society and Professor Taylor’s laboratory at the University of Birmingham. This is a highly effective service, in which the AT Society plays a central co-ordinating role.
In 2010, as Maureen wanted to step back from the Society and wanting to see the AT Society develop in size and impact, the Board appointed its first Chief Executive. Shortly after this, a full-time Fundraising and Relationship Manager was appointed too.
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 AT 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 AT are extremely popular. We have a large social media following, and our research activities have a major international impact.
Over the years the AT 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 AT. In 2004 we supported Professor Malcolm Taylor in organising the world’s first ever conference on Clinical Science in AT. 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 AT Clinical Research Conferences.
In 2012, the AT Society published the world’s first clinical guidance document on treating AT 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 AT Patient Registry to gather clinical data on people with AT.
The Society has always looked to work in partnership with other organisations that share our aims and we have very close working relationships with AT 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 AT and to support adults with AT 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.