So 2017 is finally coming to an end. This year has been one of our busiest yet, with THREE patient workshops, a flurry of fundraising activity and even a bit of globe-trotting to promote the AKU Society! We have lots of plans for 2018, which we will release early in the New Year. Now, it’s time to look back on what we’ve done.
Our Patient Workshops
In 2017 the AKU Society held two workshops for adult alkaptonuria (AKU) patients. One, in March, was at London’s Alexandra Palace. The other, in November, was at Liverpool’s Bluecoat. By doing this we made sure that as many AKU patients as possible would have the chance to come – and come they did!
As well as meeting other patients from all over the country, guests at both workshops got to see lots of varied presentations. Nick Harrison presented the online care management system Patients Know Best(PKB). The National Alkaptonuria Centre (NAC) uses this to keep patients in touch with medical professionals. Shirley Judd, the NAC dietitian, also spoke. Much-appreciated by AKU patients, she gave them tips on limiting protein in their diet to stop tyrosine (a by-product of the AKU treatment process) building up. We also heard from Vitaflo and Nutricia, specialist nutrition companies – then got to try out their low-protein and protein-free products for ourselves, on the stands!
At both workshops, guests also got to hear about the latest scientific research. Leading AKU researchers Dr Adam Taylor from the University of Lancaster (in March) and Professors Ranganath and Gallagher from the University of Liverpool (in November) told us about the efforts to develop an effective treatment. A particular highlight was November’s ‘patient stories’. Antony, Brenda and Paul told us about their struggles. They thanked the AKU Society and the NAC for their constant support.
First Children’s Workshop
In July we hosted an extra patient workshop with a twist. It was for children – and held at ZSL London Zoo!
The young AKU patients heard about diet from Lesley Harrison, our Patient Support Manager, who was standing in for Shirley Judd. Professor Ranganath also told them and their parents what they might later expect from the NAC. Gabor Barton, of Liverpool John Moores University, explained the principles of gait analysis – how AKU affects the way people walk. Under his supervision, the children designed a game, ‘Goblin Post Office’, which was quite hard to do!
The real stars, however, were the animals. We all loved the two meerkats, April and Digger, whom we got to see gobble up their favourite treat – live bugs! The tawny owl, Owlberta, was small but impressive. The keeper answered some very smart questions from the children about the way it hunts. All in all, the workshop, which also saw the launch of our first Children’s Booklet (supported by SOBI andVitaflo), was a smash hit. We’re very grateful to all who came.
AKU Society on the Road
In May, Oliver, then our CEO, and Ciarán, our Clinical Trials Officer, travelled to Budapest for the Eurordis – European Organisation for Rare Diseases membership meeting. This brings together patient groups from all over Europe to share best practice. This year was the twentieth anniversary. They talked about their successes over the last two decades and planned for the year ahead. Oliver gave a presentation about the DevelopAKUre consortium, which we have put together so that we can do clinical trials into an effective treatment for AKU. Then he helped to organise the workshop on practical advice – the ‘Survival Kit for Patient Organisations’.
Closer to home, the AKU Society was represented at the Royal College of Nursing Congress (May) and at the Best Practice 2017 event for the primary care sector (October). Costello Medical, our medical consultants, also presented a poster about NAC research at the InSPIRe (Innovation in Small Populations Research) conference in April. We are very grateful to them.
The Year in Fundraising
This year, a lot of people got on their feet for the AKU Society. We had seven runners in the Cambridge half marathon in March. Braving cold and miserable weather, they raised £1609 for the AKU Society. In April, they were joined by Joe England, who ran the London Marathon for us, raising an even more impressive £1725!
In November, Hannah Shepherd from the Liverpool John Moores gait lab decided to trek to Everest Base Camp in fifteen days. This took her to a height of 5,364m above sea level, higher than Mont Blanc or the Eiger. Hannah has raised £1,170 for us. You can still donate online here.
In June we travelled to Liverpool for our second Stand up for AKU Comedy Night. The hilarious Pam Ford was once again our host. Mike Osbourne, Eddie Fortune, Ant Campbell and Clayton Jones regaled us all with some brilliant jokes, and the headliner, Ross Leslie, brought the house down. The night was a huge success, raising £802. We will certainly be repeating it next year.