In today’s blog, we hear from Rory and Robin who are both leaving the AKU Society for pastures new. They will both be sorely missed by both patients and colleagues alike.


I started working for the AKU Society in September last year. The entire experience has been very positive and I will always closely follow what the Society is up to in the future.In just my second week I went to the NAC in Liverpool and this really helped to reinforce what the charity is working towards. I got to understand how the disease impacts patients’ lives whilst spending time with them in the hospital. I was also shown around the research labs and listened to what the scientists were working on. This understanding of the science and creating a bond with patients have been a great motivation in gaining funds for the charity ever since.Over the last year a couple of highlights spring to mind. One of my first jobs was to organise our Garrod Day coffee morning. Ciarán and I worked hard to sell cake and coffee in the office, whilst others held their own events. We had kind supporters in Australia and the USA, with the research team up in Liverpool doing their bit as well. It was a fantastic event and I hope that this year can be even bigger!Then there was the Cambridge half marathon that I ran with some friends. Even though the weather was rather grim, the day itself was great and we raised some crucial funds for the Society. I particularly enjoyed informing other runners about AKU as they enquired about it after seeing our t-shirts.I will be leaving the AKU Society on a real high. Different grants have been pouring in of late and I get to attend our Children’s Workshop at London Zoo. It will be great to meet different families and find out more about how AKU has affected their lives.I am now moving to another charity based in Cambridge, 

The Cambridgeshire Deaf Association. I’m moving on with fond memories and I’m looking forward to a new challenge.


Working for the AKU Society has been a fantastic experience.I still remember going to the NAC in my second week to meet AKU patients for the first time. Working in communications, I am always looking to see how I can get more people online and engaged within the AKU community. Speaking to one patient in particular, I was curious to see if they were aware of our Facebook and Twitter pages and if they ever got involved with them. The patient told me they stayed away from anything to do with the AKU Society whenever they could to forget that they had AKU. This was really valuable for me to learn so early on and really helped to shape how I work here.My highlight working here was definitely the Stand Up For AKU Comedy night in Liverpool. We had a hilarious group of comedians and a brilliant venue which made the night an outstanding experience. Being able to host this event in Liverpool to entertain the doctors and nurses from the Royal Liverpool Hospital made it a really worthwhile venture. Travelling to Amsterdam for the 

DevelopAKUre project board meeting and getting to meet patients at workshops have also been great experiences.Meeting with patients and seeing how the work we do affects them has been a rewarding experience which I will really miss. I will also miss the office atmosphere, sharing with our neighbours 

Findacure and 

Sookio has brought some great laughs. Of course I can’t forget the office drawing competition, which I regularly placed a strong 4th – 6th place.In my final week, I will attend the Children’s Workshop at London Zoo. I am really looking forward to this event to see how we can support young people with AKU.Although I am leaving the AKU Society I am not leaving Cambridge. I will be based on the other side of the city working for Cambridgeshire County Council.

I have had a great time working here, and hope all the great work done here continues well into the future