Videos

AngelmanUK have made a series of videos to help support families through diagnosis and beyond, while also raising awareness of Angelman Syndrome. The films have been produced & directed by Molly Brown, seespeakhear.com and Lottie Fox-Jones, lottiefoxjones.com

Thank you to all those who shared their stories and smiles in these films.

AngelmanUK asked families, carers and professionals to give one word to represent Angelman Syndrome. This film is intended for new families who have just received a diagnosis to get an understanding of what life is like living with Angelman Syndrome. Every person with AS had different likes, needs and abilities, and there are ups and downs in every relationship.

Find out what AngelmanUK means to families nationwide by watching this film.

We spent the weekend at the AngelmanUK 2018 Conference in August to capture how important the charity is to the hundreds of families that rely upon it everyday. We hope it encourages more families, who are left feeling isolated after a diagnosis, to find community and support with AngelmanUK.

The question everyone wants to know. This short film gives you an insight into what somebody with Angelman Syndrome is like and how it affects them and their family or carers on a daily basis.

This rare genetic disorder affects families across the world and is often recognised by the persons very smiley and happy behaviour.

AngelmanUK asked Professor Bernard Dan, Paediatric Neurologist and Editor-in-Chief of Developmental Medicine and Child Neurology at Mac Keith Press what alternative treatments are available to treat Epilepsy if typical drug remedies can’t be used.

AngelmanUK asked two professionals their views on using Cannabis to treat Epilepsy.

Professor Bernard Dan is a Paediatric Neurologist and Editor-in-Chief of Developmental Medicine and Child Neurology at Mac Keith Press. Dr Rebecca Burdine is Associate Professor of Molecular Biology at Princeton University and also mother to Sophie who has Angelman Syndrome.

In August 2018 the UK charity for Angelman Syndrome (formerly ASSERT) was rebranded to AngelmanUK.

Here’s a short film by Christyan Fox, made to introduce the new branding at the 2018 AngelmanUK Family Conference.

Communication Part One offers an overview of what it might be like to communicate with somebody that has Angelman Syndrome. It briefly covers the various types of communication methods such as PODD books or Proloquo2go. Families give an insight into their experiences and Professionals advise on what to expect moving forward. The film highlights that individuals communicate in various ways and at different levels of interaction. Part two will take a more in depth look into communication.

Alternative and Augmentative Communication is a very important part of life with Angelman Syndrome. This film offers an introduction on how to begin using AAC to communicate with somebody that has Angelman Syndrome. It looks into what kind of language should be used and what you might expect to find at the beginning. The professionals in this film offer their knowledge and tips to help prepare families and carers ready for starting to use AAC.

A film about young carers. It offers an insight into the emotions and experiences of children that have a sibling with a learning disability. The film is exclusively narrated by siblings who wanted to share their thoughts on what it’s really like to grow up as a young carer. It highlights the maturity required from these young people as they discuss the difficulties and the positives of their daily life.

Epilepsy affects 80% of people with Angelman Syndrome at some point in their lives. This film explains how people may be affected by Epilepsy, how they noticed it, when it occurred and how they treated it. It offers some brief advice on how to spot it and help get it diagnosed, along with describing what the most common types of seizure symptoms are.
Naturally, Epilepsy is a very complex subject so it’s important to treat each case differently. Please make sure you talk to your doctor if you think your child has any seizures. It’s very important to have it diagnosed and treated.

This film gives an insight into what behaviours are commonly seen in people with Angelman Syndrome. You get to hear from family’s who have adapted their lives to suit Angelman Syndrome and it’s characteristics. Some common behaviours include; determination, excitement, love of food, therefore grabbing food, pulling hair, stubborness, chewing clothes, a short attention span, hugging, and reaching out for objects and people in the surrounding environment.

AngelmanUK asked families what their experience of the transition process was like and what advice they could offer to others. Transition refers to the process of changing from child to adult services and becoming more independent. Many families find this time challenging because they have to swap services and professionals when the child turns 18 and becomes an adult. This changes can be necessary for Medical Consultants, Schools, Colleges, Respite, Social workers, Therapists and more. Services and procedures vary between cities and boroughs in the UK so this can add to the complications of the process.

AngelmanUK asked families what their experience of Challenging Behaviour is and if they could explain what it means to them. Many children and adults with Angelman Syndrome will show some behaviours that are challenging at some point in their lives and the term can be used to describe many different things. Challenging behaviour is a term that can be used to describe physically challenging behaviour such as; biting, kicking, pulling hair or self harming. However, it can also be used to describe something that is ongoing and difficult to manage such as; stubbornness, refusals ie. refusing to leave a place, difficulty staying still and waiting in queues, obsessions with automatic doors, or repeatedly shredding nappies or toys. These behaviours can be linked to many things such as puberty, epilepsy, general illness, boredom, over excitement, side effects of medication, and as a means to communicate a message.

Rogue One Director, Gareth Edwards, meets AngelmanUK on set to discuss the rare genetic disorder. Gareth is Patron to the charity and his niece Ella, has Angelman Syndrome.