How was FAST UK born?
“FAST (Foundation for Angelman Syndrome Therapeutics) UK was born after our eldest daughter Amelia was diagnosed with Angelman syndrome just after her first birthday. After the initial shock of the diagnosis, my wife Tam and I started looking around to see what help was available and we came across FAST. I was in touch with Paula Evans, Chairperson of FAST, and in December 2015, Tam and I went to Chicago for the FAST Gala. We were so impressed with what was happening in the US and really felt that the UK could benefit from something similar, as at the time the only charity specifically dedicated to AS was Assert and their main priority was to provide care for people with AS and support for their families. Tam and I were focused on raising money to fund science in order to try to find a cure so we asked Paula after the gala whether I could set up FAST UK. In October 2016, after a series of conversations, she agreed to let us set up FAST UK.”
Tell us your story and why you are leading FAST UK
“My daughter Amelia began having absence seizures at the beginning of 2015, which resulted in us taking her to the hospital where we stayed for 10 days while they performed every test imaginable, all resulting in nothing. Amelia was about to be discharged and my wife burst into tears while telling the pediatrician she knew that something was wrong. The pediatrician (who we still see now) advised us to see a private neurologist that he highly regarded. We were able to get an appointment very quickly and she guessed in the first appointment that it was ‘possibly something called Angelman syndrome,’ purely by the fact that Amelia found the reflex test on her knees hilarious. The neurologist then said at the end of the appointment that they would test Amelia’s DNA and, ‘whatever you do, don’t Google it.’ You can guess what we did! We then had an agonizing 9 week wait for the results to come back. Having received the diagnosis, my wife Tam and I were determined that we would not just accept that there was nothing that could be done and hence why meeting Paula and going to the Gala for the first time was so incredibly inspiring. Our parents also joined us on the trip and they too, were overwhelmed. We proceeded to meet so many amazing people and became part of the FAST community, which is something pretty special. It was this that made us determined to get involved and set something up in the UK.”
What is FAST UK’s mission? What are its top priorities right now?
“FAST UK’s mission is to work alongside FAST US, FAST Canada, FAST Australia and those in Europe [FAST Italy and FAST France] to raise money, and of course awareness, to ultimately find a cure for this debilitating syndrome. 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 other funding sources and organizations around the globe.
“We took the decision very early on that due to the fact that the US was so far ahead of the curve with regards to the amazing scientific research that it made sense to support FAST in the US. Our main priority right now is to make sure that the UK is prepared and in a position to be able to hold clinical trials when the time comes. We are teaming up with the acclaimed clinical researcher, Professor Laurent Servais (PhD), Professor of Pediatric Neuromuscular Diseases at the MDUK Oxford Neuromuscular Centre, to run a Natural History study with the goal of capturing data that will help in bringing clinical trials for AS to the UK as soon as possible. We also have the long term aim of setting up an AS center of excellence in Oxford, as currently we have no such facility in the UK and as a result the quality of care for people with AS varies dramatically.”
Tell us about FAST UK’s fundraising efforts
“We have had some fantastic fundraising events all over the country, from people holding galas to others running marathons for FAST UK. One of the most memorable fundraisers was an event called Art for Angelman where we managed to persuade just over 200 professional artists to all produce and donate a piece of art all of the same size. We then framed them identically, held an exhibition in a London art gallery and had a large drinks reception where all the pieces were put in to a raffle. People bought tickets to come and as part of the ticket they were entered into the raffle. We had 400 people at the reception and as a result 200 people won a piece of art. The event raised just over £60,000.
“As well as raising money for scientific research, we feel that it is as important to be raising as much awareness as we possibly can about AS in the UK. Fundraisers like Art for Angelman not only raise large amounts of money but they also do so much for raising awareness.”