FAST Global Highlight - United Kingdom

FAST UK was initially set up by Tom and Tamsin Keogh in 2016 after their daughter, Amelia, now 8, was diagnosed with Angelman syndrome the year before. They visited the FAST Gala in Chicago in 2015 with both sets of grandparents and were blown away by what they saw there. The hope, positivity and sheer determination of the scientists, pharma companies and community made them want to do something similar in the United Kingdom. When their daughter first started showing signs that something wasn't right and following a 10 day stay in hospital where Amelia underwent many tests, they were astounded that the doctors and specialists could not diagnose what Amelia had. It was only when they took their daughter to see a neurologist that the doctor said, “whatever you do, don't Google it but I think it is something called Angelman syndrome.”Tom and Tamsin subsequently found out that the neurologist had diagnosed a child with AS just 2 weeks before.

Therefore, they felt that they didn't want other parents to go through the same long road that they had gone down and wanted to set up the charity to create awareness as well as to raise vital funds to find a cure for Angelman syndrome.

FAST UK’s main project and where the majority of their funds are directed currently is the Natural History Study which is being run by Professor Laurent Servais of Oxford University at the John Radcliffe Hospital in Oxford. In addition, FAST UK continues to support families newly diagnosed with AS as well as encourage families, friends, relatives of those with AS to raise funds and support for FAST UK. Our charity in the UK is relatively small and our greatest challenge is fundraising. We have 8 runners who ran the Royal Parks Half Marathon in Central London on the 9th October. We encourage as many people to take part as possible as well as join other challenges/fundraisers across the United Kingdom.

FAST UK contributes to the Global mission by being the first in the UK to investigate and fund a Natural History Study for Angelman syndrome locally, with a view to entice and encourage the development of clinical trials in the UK. We very much want to be ready to be able to help facilitate clinical trials within the United Kingdom.

FAST UK supports all global initiatives and we would help any organisation as and when it is needed.

-FAST UK

Tom Keogh (Chairman) | Tamsin Keogh | Louise Prince | Kate Hamilton | Antonia Felix | Julien de Bournet | Irina Karaseva