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.
Gareth Edwards, the award winning British director and special effects artist is ASSERT's new patron.
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 (2014) in both Vancouver and Hawaii. The film is set for release shortly and the global attention is building. Gareth has yet to confirm whether the scenes of post apocalyptic destruction seen in his films are based on his real life experiences. But we are sure that they must have played a small part. How could they not? More details on Gareth can be found on the new Spring 2014 newsletter on our downloads page.
You can now order ASSERT’s new 2014 Conference T-shirts and other items via our partner merchandising site, Spreadshirt. Due to popular demand we’ve introduced a whole new range of ‘I’m No Angel’ items to tie in with the conference. You can check out all the new designs - along with all the sizes and colours - by going directly to the Spreadshirt site: www.angelmanuk.org/spreadshirt
Want your ‘No Angel’ shirts without ASSERT branding? No problem! The new lines are available with and without our logo. Not only that but we’ve reviewed our range and introduced a lot of new, cheaper items. Save the postage fees: collect your shirts at the 2014 Conference.
Read the full details here...
Inspired by the runners in the London Marathon? Then why not grab one of our bond places in the Great Runs later this year.
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.
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 is working and is on our 2015 calendar - themed those with AS and their siblings. Please send your pictures to email@example.com by 1st August.
Jonathan lives in Wiltshire and will help with the south west region. With both an older sister (AS) and a younger one, Jonathan has experienced growing up in an AS household first hand. His family also have strong historical links to the founding of ASSERT, so we think that makes him ideal for this important role.
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.
The requested conference application date has now passed and it looks like we're going to fill the hotel again. Thank you for responding so promptly. If you have not yet sent your form back, please do so and if there is space available we will accept your booking. New diagnosis families will continue to receive conference details with their information packs and we will try to accommodate wherever possible. Read more...