Reece, our Admin and Communications Officer, is leaving our team at the end of this week. He is going back to the University of Cambridge to study for Master’s in Classics, with a particular focus on the politics of ancient Rome. This week, Reece talks about the highlights of his time at the AKU Society.
As soon as I had settled into the office, I went to Liverpool to see the National Alkaptonuria Centre (NAC). I followed new patient Bob Montague around as he underwent a series of tests to check how AKU had affected him. Finally, he got his batch of nitisinone – the treatment for AKU. I was very impressed by how efficient the system was. They had organised everything so that everyone had exactly the right test at the right time.
I have been lucky enough to attend two patient workshops – one in November and one in April. The April one, in particular, was amazing. It brought together 89 patients from places as distant as Canada, the United States, Belarus, Jordan, Brazil and La Réunion. Because it lasted two days (including a large three-course dinner) I got to know some of the patients well. Their stories were inspiring. I hope that in the future everyone in the world who needs it will be able to get their hands on an AKU treatment.
I have also helped to promote the AKU Society’s work at conferences. This job has taken me to a Rare Disease UK reception at the Scottish Parliament in Edinburgh and to academic lectures organised by the Cambridge Rare Disease Network. It has taken me to the Orphan Drugs and Rare Diseases Global Congress Europe in London and to the OARSI World Congress on Osteoarthritis in Liverpool. I have been to no fewer than four events with our friends at Findacure. The highlight, though, has to be May’s European Conference on Rare Diseases and Orphan Products. This was held by the European rare disease patient group EURORDIS in the beautiful city of Vienna. I met some interesting people who knew a huge amount about rare diseases.
We have held two fundraising events in my time here. Firstly, Hannah Shepherd walked to the base camp of Mount Everest in November, raising a staggering £1,170. While I can’t claim much credit for Hannah’s achievements, I was able to persuade my old friend Jamie Rumbelow to run the Edinburgh half marathon for us in May. Jamie ran the race in under two hours and raised £363.85. He did a wonderful job. Recently, I’ve been putting the final preparations in place for our Stand up for AKU! Comedy night at Cambridge’s Portland Arms on Oct. 3rd. I may be leaving the team, but I’m coming on the night – and expect to have a good laugh!
This job has taught me a great deal. Thanks to the AKU Society, I have dived into the wonderful world of medical research and come out more informed. I have discovered fascinating things about genetics. I have hobnobbed with pharmaceutical bosses, talking about the fine details of clinical trials. I have gone to real academic conferences. When the news broke that nitisinone had been proven to treat AKU at the NAC, I actually read the scientific paper. I even understood it!
More importantly, I have been able to help. Many people with AKU benefit greatly from the support we give them. As Admin and Communications Officer, I made sure that the AKU Society ran efficiently. I also promoted it to patients, potential patients and to the world in general. I think that I played some part in changing lives.