ASSERT Angelman Syndrome Support Education and Research Trust

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Hello and welcome to Assert

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 assert@angelmanuk.org or on our telephone support line: 0300 999 0102.

Meet our new Patron Gareth Edwards, the award winning British director and special effects artist is ASSERT's new patron.

Gareth EdwardsGareth, 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 a new project for Disney/Lucasfilm- set for a 2016 release.

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 orAngelman Syndrome Clinics 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.

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NEWS...

Introduction to Angelman Syndrome videoWatch our Introduction to Angelman Syndrome video here:

Communication...

Communication, along with research, are the current hot topics in Angelman Syndrome. 2015 is going to be a busy year for both these fields. We have many things at the planning stage so please check back regularly for the latest news - or visit our Facebook and Twitter pages.

Proloquo2Go...

ASSERT have secured a fantastic opportunity to enjoy a days training with David Niemeijer,(CEO of AssistiveWare and creator of Proloquo2Go) and Jennifer Marden (VP of clinical development and SaLT) with minimal costs on Saturday 7th February 2015 at our conference hotel – Coventry Hilton. Advance booking is required as the day is limited in numbers and open to both members, non-members and professionals. Contact assert@angelmanuk.org to find out more or read the Autumn newsletter.

Katie Cunnea writes about current Angelman research...

Read her fascinating report in our Article Archive here...

Angelman Syndrome family asked to leave Harvester Restaurant

ASSERT member Helen Brennan, from Chandler’s Ford, Hampshire, was recently asked to leave a Harvester restaurant when her AS daughter Megan, 19, was deemed to be being too noisy by staff – although not, it seems, by neighbouring diners. As responsible parents of those with and without AS, most of us will spend a lot of time ensuring that our children do not unnecessarily disturb others in such circumstances but it seems in this case, that Megan was simply enjoying herself too much. The incident has raised a lot of criticism of the restaurant chain and has featured in many media reports. ASSERT contacted Harvester to offer our help in educating their teams. The offer was not accepted and so we have decided to contact each of their branches (200+), along with their head office, with a copy of our 'What is Angelman Syndrome?' leaflet. If it helps prevent one other family (dealing with any condition) from enduring the same experience as Helen, then it will have been worth it.

Helen said; 'Thank you very much for getting involved. My whole purpose in publicising it is to ensure proper training is put in place in order for our children to be understood better and for this never to happen to another family. Although this has been distressing and quite an upheaval to normal life, I am fully aware that it is an issue that needs to be addressed and for the amount of time I have taken to discuss this with radio and TV stations, I am hopeful that companies will take disability seriously and cater accordingly for different needs.'

We can only hope.

ASSERT calendars and jute bags...

Both the 2015 siblings calendar and the ASSERT jute bags are still available. An ideal Christmas present for every single family member and friend ! Please contact Lisa Court for more details.

Gareth Edwards Interview

Meet our patron – Gareth Edwards...

Christyan Fox interviews Gareth Edwards, director of ‘Godzilla’. Gareth has first hand experience of Angelman Syndrome as his niece has the condition. Watch the interview here...

International Angelman Day...

International Angelman Day, marked around the world on February 15th, is fast approaching. Are you doing anything special to mark the day in your local area ? Can we help? Contact Rich Williams.

Help us find the rest of our Angelman family!

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.

Download more information here (147k)...