This Friday will be our Clinical Trial Coordinator, Hana’s last day at the AKU Society. In this week’s blog post, Hana has answered questions from the rest of the team about her time at the AKU Society and her plans for the future.

What’s your AKU story?

I first heard about AKU when I worked with Nick on a communications project for Findacure. Later that year I applied for the Clinical Trials Coordinator position at the AKU Society.  It seemed like a challenging opportunity to put my biology degree and management course to good use helping people!

FP7 team

Over the last two years, I feel like I’ve definitely done that. I joined the team 3 days before the kick-off meeting for DevelopAKUre in Slovakia. I’ve seen the DevelopAKUre project go from strength to strength. Our first clinical trial, SONIA 1, was a success and SONIA 2 is now underway.  The consortium have won several major awards including the Global Genes RARE Champion of Hope Award for Collaborations in Science. More importantly, the feedback from patients taking part in the trials has been consistently positive.

What are you proud of achieving during your time here?

Last week a patient said I’d always been ‘both approachable and efficient’. I don’t think there’s anything else I could be prouder of. I’ve always tried to be both those things for all the patients I’ve had contact with.

I’m also proud of conquering my fear of public speaking! I used to be terrified of speaking in front of a room full of people. I’ve come to really enjoy it through explaining the science of AKU to our patients, presenting to the DevelopAKUre consortium and sharing our experiences with other patient groups.

What’s your funniest memory of working at the AKU Society?

I don’t know where to start! The AKU Society team are a very funny bunch. Watching Jenni dye Oliver and Nick’s hair after the Indiegogo campaign probably tops the list. Other memorable moments include the time we found an inflatable pink hammer in the office cupboard which Lesley kept hitting everyone over the head with, and all the times we’ve ‘kidnapped’ stuffed animals off each other’s desks.LesleySantasmall

What will you miss the most when you move on?

The patients. No doubt about it. A kind email from a patient can always make my day, if not my week! I will also miss spending time with the patients during their visits to the hospital in Liverpool. Even those who tease me about not speaking any other European languages!

I will also miss my colleagues – both the AKU Society team and our lovely DevelopAKUre partners. Working so closely with people from seven different countries has been incredibly interesting and has taught me so much.

What are you looking forward to in your new role?


My love for science has always been at its strongest when I’m sharing it with other people – whether I’m explaining genetics to a room full of AKU patients using Styrofoam balls, or to my parents at the dinner table using blocks of chocolate and raisins.

One of the many things my time at the AKU Society has taught me is how important it is to break down the barriers surrounding science. Science and medicine aren’t just professions – they affect each and every one of us every single day of our lives.

Next week, I will be joining the British Science Association. I’m immensely looking forward to working at the forefront of public engagement with science. The organisation have just completed a period of reflection which has resulted in a new vision and several new roles. Joining during this period of change is going to be really exciting.

Will you keep in contact with the AKU Society?


The team have informed me I must answer ‘yes’ to this question which would have been my answer even without the coercion! A team this size becomes a second family and I can’t imagine losing contact with them. I have been blessed to spend the last two years working with such an interesting, inspiring, motivated and tiny bit eccentric group of people.

What’s the answer to life, the universe and everything?

Well that’s a tough one Nick. I’d have to say 42 or just being happy.

How can we stay in touch with you?

If you’d like to stay in touch, let me know at [email protected]. After I leave, I’m sure someone from the AKU Society will be happy to pass on a message.

You can also find me on Twitter (@HanaAyoob) or over on my personal blog.