With 2015 drawing to an end, it is a time of reflection for the AKU team. In this week’s blog we highlight our key achievements of 2015!
Last week the AKU team got together to reflect on the highs and lows of 2015. The meeting was a great opportunity for us to discuss our personal highlights and acknowledge all the fantastic things we have achieved this year!
NAC
In January we reached our target of 50 patients attending the National Alkaptonuria Centre (NAC)! This really is a great achievement and we would like to thank all our patients and team of medical experts for making this possible.
12 months on, we now have 56 UK patients attending the NAC and we hope this number will continue to increase next year.
Working with Genetic Alliance
We worked with Genetic Alliance to organise an event in January aboutimproving treatment access for Welsh rare disease patients. The event bought together patients, medical experts and the Welsh Specialised Service Committee to raise awareness of the difficulties Welsh patients currently face accessing specialised services.
DevelopAKUre
We had many challenges to overcome when recruiting patients for our SONIA2 clinical trial, particularly as English patients were unable to participate as they were attending the NAC. Despite challenges, we were thrilled to reach full recruitment in February, with 138 patients enrolled in our clinical trial. For such a rare disease this really is a fantastic achievement!
In February we launched our Indiegogo fundraising campaign, where we raised money to support patients enrolled in our SOFIA clinical trial. The campaign was a massive success and we were delighted to exceed our target and raise $36,496! We would like to thank all our patients and supporters who made this campaign such a success!
RCGP Module
On Rare Disease day 2015, we launched our Royal College of General Practitioners (RCGP) e-learning module. The module is aimed at GPs and healthcare professionals and is a fantastic way to raise awareness and ultimately improve diagnosis of AKU!
Patient Workshop
In June we invited all our UK patients to attend our 5th patient workshop at London Zoo! The day involved a variety of sessions, including chair-based exercise, an update on AKU research and a chance to meet the animals in the zoo. The workshop was a great success and to finish we were treated to some fantastic music from ‘Toying With Names’, a folk band featuring AKU patient, Gary!
Fundraising
2015 has bought a new dynamic to our work with the addition of fundraising! September was a fantastic month for fundraising: we drew our charity raffle, cycled from London to Cambridge and welcomed our first fundraising officer, Lydia to the team!
Lydia has been working hard, thinking of new and exciting ways to raise money and organised our first AKU coffee morning to celebrate Garrod Day in November! We would like to thank all our supporters who have supported our fundraising efforts this year, we hope to do even more fundraising in 2016!
DevelopAKUre 9th International Workshop on AKU
In October, the DevelopAKUre consortium attended the 9th international workshop on AKU in Copenhagen. Over 70 people attended and we heard from many speakers, all passionate about AKU research and understanding the mechanisms underlying AKU.
Staff Changes
There have been a number of staff changes in 2015, with Nick leaving his CEO position to take on a patient engagement position at AstraZeneca and Sorsha leaving her Online Communications position to go travelling. We are sad to see them go but wish them all the best in their future projects. We are very pleased that Nick will remain as Chairman and continue to be involved in the AKU journey!
We welcome Oliver to his new role as CEO, Eve to her new role as Online Communications Officer and new team member Ciarán to his Admin Assistant role.
Christmas Wishes
With 2015 nearing its end, we would like to thank all our wonderful supporters for their contributions this year. 2015 has been a fantastic year, with so many great achievements and we believe 2016 can be even better!
The AKU team would like to wish you all a very merry Christmas and a happy New Year! We hope to see many of you at our first international patient workshop next year!
