Now that 2016 is finally drawing to an end, we thought it would be a good opportunity to look back at what has been an incredible year and pick out some of the events that we are especially proud of. We hope you agree that this year has been one of our most exciting and productive yet. We have some very exciting events planned for 2017, which will be revealed early in the New Year.

Our First International Patient Workshop

In April we held our first ever International Patient Workshop in Liverpool. The event was designed to allow patients from all over the world to benefit from the expertise that is available in Liverpool, as well as those that the AKU Society can offer. The Workshop was hugely popular and attracted people from all over the world, people came from as far afield as Jordan and Canada!

Held at Everton’s home ground, Goodison Park, the Workshop was a day of vital talks given by experts in AKU and related areas. These ranged from Pete Moore, who gave a vital view on how to be a self-manager of pain, Lesley and her daughter Charlotte who demonstrated chair based exercise and a talk from Dr Adam Taylor who updated us all on the progress of research for AKU.

The day was a true success and everyone took things away with them. Slovak patient Anna Antalova said this about the day:

‘The first International Patient Workshop in Liverpool was a big success for the AKU Society team. It was an excellent event, giving a great example of how rare disease patients need to be treated and how many benefits can be given to them within a single meeting. I also loved speaking with many patients from different countries and especially with all of you (Lesley, Oliver, Lydia, Eve and Ciarán). I enjoyed each conversation and agenda topic and it gave me lots of personal motivation to keep going!’

NAC anniversary

June this year was a very special anniversary as it marked the 5th Visit to the NAC of AKU Patients Sharon and Maureen. The NAC opened its doors for the very first time to Sharon and Maureen. The centre offers AKU patients the opportunity to receive care and much needed help from some of the world’s top AKU experts, as well as allowing patients the opportunity to take nitisinone, which is also the drug being studied in the DevelopAKUre clinical trials.

Reflecting on her past 5 visits to the NAC Sharon said:

‘My experience at the NAC every year over the past four years has been such a positive one. I have been amazed at the organisational aspect of having to arrange so many appointments in a busy hospital setting and in a short space of time! It works so well, and without too many hiccups. The consultants I have seen over the years seem genuinely interested in my health and well-being. They are all easy to talk with and good at explaining things.

It has also given me a chance to meet and chat with other AKU patients over a period of several days and in informal settings. We are able to get together in the evenings to just talk about anything.’


The DevelopAKUre Consortium also celebrated an important anniversary. This November marked 4 years since the consortium received funding to begin the 3 clinical trials that would test the effectiveness and safety of nitisinone in AKU Patients, hopefully leading to the first licensed treatment that could limit the symptoms of the debilitating disease.

We are also approaching the end of the patient element of the SOFIA observational Study. SOFIA is designed to underline at what age symptoms of AKU begin so that doctors can target any potential treatment at the right age group. This could lead to patients potentially growing up with drastically reduced symptoms of the disease.

2016 in Fundraising

This year was an incredible year for fundraising! Starting with an amazingly successful Cambridge Half Marathon in February. Ten brave runners raised an incredible £2897! We also held our first ever Stand Up for AKU Comedy Night In June. Held at The Portland Arms, a venue in Cambridge, 80 guests paid to see some of the best comic talent in the UK. The night raised a whopping £556!

Katie Smith daughter of NAC patient Richard, raised £280 by running the Cardiff half marathon in October. On 25th November we also held Garrod Day Coffee Mornings all over the world. Garrod Day is designed to celebrate the birthday of Sir Archibald Garrod, the man who first described AKU, and raise funds to support the AKU Society. Along with the Cambridge Coffee Morning hosted by Rory and Ciarán at the AKU Offices which raised £322, AKU patient Ann Kerrigan held a Coffee Morning in Bristol that raised a fabulous £120, Sue Lee in London raised £140 and Kim Hol all the way in Australia raised a huge $185! The AKU Society also held a raffle, that had some very exciting prizes and raised another huge £160.Thank you from the bottom of our hearts to everyone who has made 2016 such a fantastic fundraising year. Let’s make 2017 even better!

All change

We also said fond farewells to Eve and Lydia, who left for pastures new. In their place, we welcomed Rory and Robin. Rory is now our fundraising Officer and will apply to trust and foundations for much-needed funds and Robin is the new Admin and Events Officer who will handle social media, reporting and planning all those exciting community events in 2017. Be sure to look out for Rory and Robin at our events in the New Year.

From Everyone At The AKU Society, We Wish You All Very Happy Holidays!