Welcome to the website for Assert, the Angelman Syndrome Support Education & Research Trust. We are a UK based charity whose primary aims are:
Support – supporting families and carers of people with Angelman Syndrome. Also providing support to professionals who meet AS individuals, even though they may meet very few individuals with Angelman Syndrome in their professional career.
Education – providing education and raising awareness of this rare neurological condition and the issues that surround it. As with many such conditions, Angelman Syndrome is not just about a simple diagnosis, but requires parents and carers to adapt as situations change and the individual grows older. We aim to provide information and advice for all ages, drawing on the vast knowledge of the trustees and our experts panel, some of whom are world renowned experts in Angelman Syndrome.
Research – assisting organisations and individuals in carrying out research into Angelman Syndrome and its many related areas. Much of this research has already provided great benefit to families and carers.
The aim of this website is to be a source of information for you, opening the doors on the world of Angelman Syndrome. There is a wide variety of information on these pages and much of it will be regularly updated so do check back regularly.
If you would like to become a member of Assert please contact us either via email firstname.lastname@example.org or on our telephone support line: 0300 999 0102.
To mark International Angelman Day 2014 (February 15th), ASSERT are very pleased to announce that we have our very first patron.
Gareth Edwards, the award winning British director and special effects artist, has agreed to take up the post ahead of a very busy few months in the world wide media spotlight; we’re sure that there are many more to come.
Gareth, from Nuneaton, has first hand experience of Angelman Syndrome as his niece has the condition. He has also seen the work that ASSERT does first hand having attended both central regional meetings and our national conference with his family in the past.
His most notable release to date is the independent science fiction film Monsters (2010)- a film which won him great critical acclaim and widespread media interest.
Having attracted Hollywood attention, he has spent the last couple of years working on the big-budget reworking of the classic Godzilla in both Vancouver and Hawaii. The film is set for release in May this year and already the global attention is building. As the premier gets closer, this will only continue to grow.
Gareth has yet to confirm whether the scenes of post apocalyptic destruction seen in the trailer currently being seen around the world are based on his real life experiences. But we are sure that they must have played a small part. How could they not?
Find out more about Gareth in the next newsletter. But for now we would like to thank him for helping us raise the profile of both ASSERT and Angelman Syndrome; and wish him the best of luck for the next few months.
I'm sure most of you have set some New Year's resolutions to lose weight or get fit or do something worthwhile - well how about combining all 3 and applying for one of our Bupa 'Great' Run places!
In conjunction with the NHS, we are holding 3 or 4 clinics each year for both adults and children with AS in Manchester. The clinics are being held for those who have a clinical need to meet with the professionals. We see 3 or 4 families at each clinic, with each family having an hour for a full consultation with a clinical geneticist, Jill Clayton-Smith, a Paediatrician, Dr Dan Hindley, a Psychologist, Eric Taylor, a Physiotherapist will also be available and we are hoping to have a Speech Therapist, Dietician and other professionals present on the day. A representative from ASSERT will also be attending for the day to discuss ways in which we can support families.
Every patient must be referred by their GP or other doctor sending a written referral to: Dr Jill Clayton-Smith, Genetic Medicine, 6th Floor St Mary’s Hospital, Oxford Rd, Manchester M13 9WL.
An exclusive snow play session has been booked at the Snow Dome in Tamworth (Staffordshire) 15th March, just for ASSERT members. Read more...
Katie Cunnea, our scientific trustee, recently attended the OrSA Summit in Italy to find out more about many of the current research projects looking at aspects of Angelman Syndrome. Read her fascinating report in our Article Archive here...
Catrina has already got to work and is co-ordinating our 2015 calendar - themed angels and their siblings. Please send your pictures to email@example.com by 1st August.
80 percent of UK people with rare syndrome still to be found. More than eight out of ten people in the UK with a rare genetic condition could be missing out on crucial support because of a lack of a diagnosis.
We are very pleased to announce that the ASSERT conference in 2014 will be held at the Hilton Hotel in Coventry on Friday 29th August – Sunday 31st August