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.
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:
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.
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.
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.
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.
The Edinburgh Marathon Festival (https://www.edinburghmarathon.com/) is the second biggest r.. ...more
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The Royal College of Nursing (RCN) Congress (https://www.rcn.org.uk/congress) is the biggest.. ...more
A rare disease is defined by the European Union (EU) as affecting fewer than one in 2,000 pe.. ...more