Our son, Ash, was born happy, healthy and gorgeous on 19 June 2019.  For the first six months of his life, he developed well, grew like a weed and was on track for an amazing future full of possibilities.  

In early 2020, just at the start of the first national lockdown in the UK, he started to have short absences that increased over the months to come until we discovered he was having severe epileptic seizures.  We were rushed for an extended stay in hospital in Oxford, helplessly watching our precious boy have painful lumbar punctures, various blood tests and scans and no-one knew what was wrong, they couldn't tell us what his future held.  Until one day, one of the rare genetic blood tests came back to tell us that our son had a 1 in 20000 chance chromosome disorder: Angelman Syndrome (AS).

The symptoms for AS are permanent and severe intellectual disability, life threatening seizures and a complete lack of speech as well as hypotonia, ataxia and other difficulties.  We were devastated and grief stricken that the life we had imagined for our beautiful son had been changed so dramatically and there didn't seem to be any glimmer of hope on the horizon.

That was until we found the Foundation for Angelman Syndrome Therapeutics (FAST) charity.  "FAST is run by an all-volunteer board of AS parents and professionals dedicated to finding a cure for AS and related disorders through the funding of an aggressive research agenda. The foundation is committed to assisting individuals living with Angelman syndrome to realize their full potential and quality of life. Our goal is to bring practical treatment into current medical practice as quickly as possible. It is our hope that grants we fund will lead to additional research support from government agencies, other funding sources and organizations around the globe. FAST is served by two boards: the board of directors and the scientific advisory board. Together, we are working hard to bring practical treatment into current medical practice as quickly as possible."

The trials currently taking place in the US are groundbreaking, inspirational and are giving hope to the thousands of families affected by AS that a cure is around the corner.  We think that research and those trials should also be happening here in the UK and the starting point for that is raising awareness and raising money for FAST UK to give Ash and others like him a real chance at an independent future.

FAST UK are committed to raising £1m per year for the next 4 years in order to carry out a Natural History study with Oxford University to facilitate clinical trials in the UK. A secondary outcome of the study will be to set up a centre of excellence for AS in Oxford providing the care and medical needs that people suffering from AS require. There is currently no such facility available in the UK. Join us today to be part of history by fundraising for the Cure Angelman Now (CAN) campaign. If anyone can, FAST UK CAN.