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.
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