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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

Conference dates for 2018

The dates for 2018 have now been announced on the events page – save the date!

**** BIG ANNOUNCEMENT ****

ASSERT are thrilled to announce that our wonderful Patron, Gareth Edwards, has helped to raise a whopping £25,000 for ASSERT at the Star Wars Celebration Europe on Friday. This was made possible by the amazing generosity of ACME Archives who very kindly co-ordinated this special opportunity for us. 250 limited edition prints were produced for “Rogue One: A Star Wars Story” and these were sold at £100 each. All proceeds have been very kindly donated to ASSERT. Thank you very much ACME Archives and also to Gareth! This is a massive amount of money and we are extremely grateful.

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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.

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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

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

News from our Facebook page:

It's International Angelman Day! Share the global love! #IAD #angelmanawareness #angelmanuk ow.ly/ocA03091dKR ... See MoreSee Less

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Hi has any parents with Angel baby's ever taken there angels abroad ? I want to take Harry to Spain with the other children he has never been away before I am scared to take him can any give me any advice about this please many thanks ... See MoreSee Less

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Has assert ever thought of some sort of letter or leaflet to parents who are diagnosed and the route they may consider.
In the home what they can request or get GP to request and what to ask for
In early yrs to help them at home ..
I.e. Occupational therapists and addaptions..

As I speak to lots of families who have no clue how they go about it.
How the OT have a duty towards their child and what government rights they have to make sure they follow out that care plan and follow time lengths so they have to help if not who they can report to.

Equipment at home.

Shower chairs
Hoists
Safe Beds
Wet rooms
Pushchairs /Wheelchairs
Orthotics for boots
Lifts

Portage 0-5 who promote play each council should have one they can access and what they meant to do...

Resources, leaflets on Angelman syndrome.
Most important a Disabled social workers that can help them! etc.

Yes we have to fight I fought many and for other children with angelmans syndrome but if they can produce resources leaflets to what their child is entitled to could help lots on what may be needed with a child with angelmams syndrome...

Just a big ask not to be rude but many young families are struggling.
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© Angelman Syndrome Support Education & Research Trust – ASSERT 2016. Registered Charity (England & Wales) 1021882