Oliver has worked at the AKU Society for the last 7 years, and has been CEO for the last 2. At the end of this week, he’ll be leaving to move into a new role at Roche but will still be helping rare disease patients to access new treatments. In today’s blog, Oliver talks about what’s happened at the AKU Society in the last few years, and how much he has seen change.
Our first two offices were pretty basic. We rented from a charity in Cambridge who gave us short-term office space in buildings that were due to be demolished. It meant cheap rent, but also holes in the walls as the owners salvaged electrical plugs, lights switches and even the door handles! One of those offices become a hotel, and the other is now expensive apartments. I’ve got fond memories of that time though, as Nick and I worked on getting some of the major grants that eventually helped to grow the charity.
In 2012, we had two key successes: the National AKU Centre
was launched with support from NHS National Specialised Services, and the European Commission granted us €6 million to launch the DevelopAKUre clinical trials
. These projects meant that we could help patients both in the UK and the rest of Europe. At this point, Lesley Harrison joined the team and enabled us to increase our patient support and begin running patient workshops.
For me, the biggest change was the start of DevelopAKUre. I still remember when I first started, and met with Prof Ranganath in Liverpool, where he told me that one day he hoped to be able to study nitisinone to see is it could possibly treat AKU patients. Just over two years later, we launched international clinical trials. Thanks to the help of several members of the AKU Society, most recently Ciarán Scott, we have been able to recruit and support almost 200 AKU patients in the three stages of DevelopAKUre. I hope that one day, nitisinone will be proven to treat AKU and be available to every AKU patient worldwide.
The other big change that I have seen is our ability to organise events. Last year, we held our first International Patient workshop. It was incredible to see patients from all over the world, from Argentina, US, Canada, across Europe and the Middle-East all come to Liverpool to learn more about their disease. We’ve held scientific conferences in several countries too, from my first in Cambridge, to events in Stockholm, Copenhagen and Amsterdam. We’ve organised comedy nights, coffee mornings, bike rides and even half-marathons too.
None of this would have been possible without the hard work of many people. I would like to thank all the AKU Society staff I have worked with over the years – Nick, Lesley, Hana, Jenni, Sorsha, Eve, Lydia, Ciarán, Robin and Rory; as well as lots of volunteers. I’d also like to particularly thank Prof Ranganath and Prof Gallagher for their work understanding and treating AKU in Liverpool. My special thanks goes to all of the AKU patients who are either a part of the NAC, enrolled into one of the DevelopAKUre clinical trials, helping to found one of the sister societies, or just attended one of our many patient workshops.
I’ll be leaving the AKU Society in the hands of Nick Sireau, who is returning as an interim CEO. Most of you will know him already, and to those that don’t, I’m confident that he’ll continue to lead the AKU Society to a fantastic future. The next few years should be transformative, as the end of the DevelopAKUre clinical trials will give definitive evidence on the effects of nitisinone as the potential first approved treatment for AKU.