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 – Historically we have assisted many 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 around the world. Today, we are founder members of the European Angelman Syndrome Alliance – a cross border research initiative that is allowing smaller groups to pool resources for the benefit of all. Globally, there is much interest in the genetics of Angelman Syndrome and we believe that this co-operational approach for the benefit of all is the way forward.
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, Ella, 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 hugely successful film Godzilla (2014). He is also known for the award winning independent science fiction film ‘Monsters’ (2010). Gareth is currently working on ‘Star Wars: Rogue One’ for Disney/Lucas Film. It is set for a 2016 release and he is already promising to give us an exclusive insight soon.
ASSERT is very proud to be supporting the UK's only specialist Angelman Syndrome clinics. 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; and 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.
on October 2nd and 3rd in Liverpool England. Liverpool and its university and hospitals are very close to the heart of Angelman Syndrome, as this is where Dr Harry Angelman lived, trained and practiced at the start of his career. Friday 2nd October will be a day dedicated to hearing inspirational researchers from across Europe and further afield, discuss how their work relates to furthering knowledge about Angelman Syndrome. The Scientific conference will take place at the brand new Centre for Research and Education, Alder Hey Children's Hospital, Liverpool. Saturday 3rd October is a day for adult family members (parents/carers) to hear what is happening in the world of science and to learn how that science affects the future of our children. The day will comprise of a series of short talks, Q & A sessions and workshops. The members' symposium will take place at the Marriott Hotel Liverpool. The weekend will conclude with a small formal gala at The Marriott Hotel for those in attendance to celebrate the 50th anniversary of Angelman Syndrome being identified. I am sure we will find time to raise a glass or two to Dr Angelman to recognise not only his outstanding work but also what would have been his 100th birthday. For more details of the Angelman Syndrome Alliance, please visit www.angelmanalliance.org.