Our fifth patient workshop took place at London Zoo on Saturday. It was a great opportunity for patients, family members and friends to meet one another, share experiences and learn more about AKU.
The day started off with an hour’s zoo time, where everyone got the opportunity to go and see their favourite animals. Meercats, lemurs, gorillas, tigers, giraffes and zebras were among the animals we visited, and some of the children attending the workshop particularly enjoyed this zoo time!
Following our visit inside the zoo we were ready for some chair-based exercises. Comedian Pam Ford led the class and bought a great deal of fun and energy to proceedings. We were introduced to some amusing moves named after Dolly Parton and Barbara Windsor, and we ended the class with our very own rendition of the YMCA.
The exercises were great fun and designed for patients to improve their strength and mobility. The great thing about them is patients can do them in their own homes. Our very own Patient Support Manager Hannah is training to be an instructor, and will be very happy to help patients get the most out of these exercises.
Following a delicious lunch, Alison Watson from Ring20 Research and Support UK talked about her own experience of setting up a charity to support patients and research. It was moving to hear her son’s complicated diagnosis as her inspiration for setting up the charity, and she was very appreciative of all the support she had received from the AKU Society, especially from Hannah, who is mentoring her through Findacure’s mentor scheme.
Steph King from Liverpool John Moores University was the next speaker of the day, who talked about gait analysis. Gait analysis is the study of human motion, and patients will have gait analysis during their NAC visits to measure joint mobility. Steph’s explanation of gait analysis was very informative, and she was particularly good at explaining how to interpret the findings in a simplified way, as aspects of the reports generated from gait analysis can be fairly complicated.
Oliver Timmis, our Head of Projects was the next speaker of the day. He gave an update on AKU research and our current DevelopAKUre trial. He started with a brief explanation of what causes AKU, and discussed the research is currently going on in Liverpool as part of our DevelopAKUre trial. Oliver went on to talk about alternative future potential treatments, including enzyme therapy and gene therapy.
Hannah Harrison was the final speaker of the day. She gave a brief talk to patients about donating their bodies to medical science, and what the process involves. This talk was given on behalf of a patient who has decided to donate his body to medical science.
For the final part of the day, we were treated to some fantastic music from ‘Toying With Names’, a folk band featuring our AKU patient, Gary, on mandolin. The band played a mixture of original and classic songs – it was the perfect end to a great day.
