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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_iconSupport

We help support families and carers of people with Angelman Syndrome. We also provide support to professionals who meet AS individuals, even though they may meet very few individuals with Angelman Syndrome in their professional career.

education-iconEducation

We aim to educate and raise 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.

research_iconResearch

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.

Watch our introductory video

Membership – find out more

News

Nuneaton director helps to highlight disorder

Nuneaton’s Gareth Edwards is doing his bit to bring International Angelman Day (IAD) to the attention of residents in the town and further afield.

Gareth-and-Ella

The event is taking place today and the movie-maker, who had a monster hit with ‘Godzilla’ and is also working on the Star Wars spin-off, ‘Rogue One’ for its release later this year, wants everyone to find out more about Angelman Syndrome (AS) and the charity ASSERT (Angelman Syndrome Support Education and Research Trust).
Gareth is the patron of the good cause and it is very close to his heart as his niece, Ella, was born with AS.
His sister and Ella’s mum, Lisa Court who lives in Nuneaton, is also a trustee of the organisation.
She said: “I became a trustee of ASSERT because I wanted to give something back for all the support we received in the early years, and still receive now.

“ASSERT is a little known charity that relies solely on donations.
“The support it gives to families affected by AS is invaluable.
“Raising the profile of AS will help raise funds which will in turn benefit our families.”
This is the fourth year that IAD has been running.
The month of February was chosen because it is rare disease month, and the 15th was chosen as Angelman Syndrome is caused because of issue with chromosome 15.
IAD is celebrated around the world with a number of countries hosting various events to raise awareness of the syndrome.

In the UK 16 separate meetings have been organised with families invited to go along meet new families, catch up with old friends and join together and celebrate all the positives.
Gareth added: “It’s an honour to be the patron of the national charity for my niece’s syndrome.
“My sister once loaned me money to help fund my student film. Later she joked if I ever became a successful director I can repay her by being the patron of her charity, so I guess this means I’ve made it.
“I really hope that by being associated with Angelman Syndrome and ASSERT I can help raise the profile of the syndrome. It’s such a rare disorder that very few people have heard of it and so I want to do what I can to help raise awareness.

“This is a big year for me with the release of Star Wars, and hopefully an even bigger year for ASSERT as we continue to raise awareness of the condition.
“Unfortunately I cant make IAD due to work commitments, but I know the families will all have a brilliant time in my hometown of Nuneaton.”
AS is a chromosome disorder that affects around one in between 15,000 and 20,000 individuals.
The main characteristics of AS are severe learning difficulties, no or limited speech, mobility issues and epilepsy. Individuals with AS will require 24/7 care for the rest of their life.
ASSERT is run by volunteers who all have a personal connection to AS.
The main aims of the organisation are support, education and research.
It relies solely on donations and all trustees are volunteers doing the role in their spare time.

Nuneaton News 15th January 2016

Zoom in on the image of Dr Harry Angelman to see some familiar faces!

Assert supports the 7 Days of Action Campaign, which aims to raise awareness of and bring about change for the people in Assessment and Treatment Units (ATUs).

ATUs are designed to be short-term secure placements for people with learning disabilities to receive treatment before moving back into the community. However, too often these services failing those who they are supposed to be supporting, with tragic and sometimes fatal consequences.

Across the UK, 3000 people are being held in an ATU, often many miles away from their families, often for many years at a time.

Like everybody else, the people in these units deserve to be living back home with their families or living in their own homes, with the right support. This is why the Assert is supporting this campaign.

News from our Facebook page:

We have been offered a very small number of additional Great North Run (11th September) places by the organisers. If you have a serious interest, please contact lisa.court@angelmanuk.org as soon as possible. ... See MoreSee Less

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Happy Father's Day to all of our amazing dads, step-dads and grandads. ... See MoreSee Less

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After a little bit of advice for my Angel toddler... Livvy will be 3 in August & she's very tall & currently weigh 16.5kg im looking to get her a new car seat but it needs to be a 5 point harness as I wouldn't trust her with just the seat beat as she likes to escape from straps... Any advice or recommendations would be appreciated... Thanks xxx ... See MoreSee Less

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ASSERT would like to wish Sue Routledge & all at Pitt Hopkins UK congratulations and a huge well done on the one month anniversary of becoming a registered charity. It takes strength and determination to form a charity for a rare disorder, and you have worked hard to see it happen. It has been a pleasure to have supported you along the way and we wish you much success for the future. ... See MoreSee Less

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MGCC MG Trophy Championship - complete with Assert logo! ... See MoreSee Less

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© Angelman Syndrome Support Education & Research Trust – ASSERT 2016