ASSERT began in 1991 – although launched 1st January 1992 – as a support group run by families and for the benefit of families of people with Angelman Syndrome.
ASSERT began with 15 families and these pioneers have subsequently been joined by more and more from within the UK and from places as far away as Australia and New Zealand and America as the diagnosis has become more widespread over the years.
Dr Harry Angelman, from whom the condition was given its recognised name, was a paediatrician practising in the small Northern town of Warrington in the North of England near Manchester. In the early nineties Angelman Syndrome (originally known as ‘Happy Puppet Syndrome’) was still a little-recognised condition; although first diagnosed in the sixties by Dr Angelman, the paper he wrote was largely unacknowledged until it was taken up by Dr Charles Williams again in the late 1980’s as a condition worth studying.
ASSERT began because parents needed a positive message, practical support and realistic advice about the diagnosis and life beyond – they needed to have some idea of where the label “Angelman Syndrome” was going to take them and what the journey would be like.
At the time there was another group call the ASSG (Angelman Syndrome Support Group) which had been formed some years earlier, however the first ASSERT parents came together and set up the Angelman Syndrome Support Education Research Trust because they wanted more… a different kind of support than the ASSG could offer at the time. The founders of ASSERT, Richard and Alison Allen together with Elaine and Stephen Sears and Natalie Bradley, were determined that other parents should receive the help and information they had craved at the time they received their diagnosis, so that no other parents should feel alone unless they wished to be.
Today, ASSERT has grown. At heart it is still a mutual support group but the charity run by a small team of dedicated voluntary trustees is now held in high esteem by both professionals and families alike.
This year ASSERT is involved with the newly formed NHS-led clinic based in Manchester under the care of Dr Jill Clayton-Smith. Adopting a multi-disciplinary approach, family GPs are now able to refer cases to the clinic for holistic support in one place. The first clinic was a huge success and we are looking forward to further clinics being even more successful.
In 2014 we will be holding our 8th biennial conference. These conferences are an amazing source of information and support for our families and they are looked forward to by families and trustee’s alike. 2014 will also be ASSERT’s 21st Birthday. During those 21 years we are extremely proud to have supported many families and carers with their roles of caring for loved ones with Angelman Syndrome.
2015 will be the 50th anniversary of the discovery of Angelman Syndrome. In those 50 years tremendous strides have been made by scientists and researchers both in the UK and internationally.We will be forever grateful to those professionals who have made it their mission in life to help further our understanding of this condition and who are looking for ways to improve the lives of our loved ones.
ASSERT – Angelman Syndrome Support, Education & Research Trust