Last Wednesday was our annual Garrod Day Coffee Morning. Each year on 25th November we celebrate the birthday of Sir Archibald Garrod, who first identified AKU in 1902.
However, this year was a little different. We usually host face-to-face coffee mornings across the globe, but we went virtual this year. Due to current COVID-19 restrictions we still celebrated but through our screens!
We had much to celebrate this year due to the recent European Commission approval for Nitisinone.
Over 30 people attending our coffee morning from all around the world! From Canada, to Greece, to Russia and India. It was a great opportunity for patients to attend from every corner of the world.
We started our event at 12pm, with introductions and time for everyone to get settled in. Dr Rick Thompson, CEO of Findacure, a charity set up to help rare disease patient groups, was the first to speak. Rick gave an excellent run down on the history of AKU and The AKU Society. He then urged the AKU patient group to celebrate the success story of AKU and be part of the wider rare disease community.
AKU world expert, Professor Ranganath was next to take the stage. Ranga discussed the AKU success story and the challenges that this year has brought on too. He ended his speech in memory of AKU patient and AKU Society founder, Robert Gregory.
CEO, Nick Sireau then updated our attendees on the recent AKU Society developments and our future as a charity, with exciting new gene therapy research on the horizons.
We ensured there was a lot of time left for important questions, including matters on Brexit, diet for those with AKU, and future research. This was a great opportunity for those to get expert advice from our team. We were sad for our virtual coffee morning to end but we will certainly be going virtual again!
A huge thank you to everyone who attended and bought a ticket – these funds go towards the vital work we do to support AKU patients.
If you missed this event, then please donate £5.00 to us (with “Virtual Coffee Morning” in the notes) and we will send you a recording of the coffee morning.
Nick Sireau2020-12-03T16:27:00+00:00December 3rd, 2020|