This week is our Online Communication Officer, Eve’s last week at the AKU Society. Eve started working as Admin Assistant back in November 2014 before changing roles to Online Communications Officer in October 2015. In this week’s blog, she shares her highlights over the past two years, what she will miss and her plans for the future.
What are your future plans?
I have decided to take a couple of months off to go travelling in Nepal. I’m sure this office chair has some sort of travel bug, as previous recruits Jenni and Sorsha had a similar urge! I’m going to be doing a volunteer project out in Nepal helping with the recovery of the 2015 earthquake. I’m also looking forward to spending some time travelling around the country, experiencing Nepalese culture and hopefully, fit in some trekking and kayaking.
What will you miss the most?
I will miss the AKU team and our office buddies Findacure and Sookio. Working in such a small team means we can truly see the impact of our work and I will miss the buzz and excitement generated by new ideas and future projects. I will even miss Lesley’s crazy mutterings as she loves to talk to herself in the office!
I will, of course, miss the patients. Meeting them and hearing their stories has been massively eye-opening and I will always be in awe of their strength and positivity. I came into the Society knowing very little about rare diseases and have seen first-hand the passion and determination of this community. Nick’sAKU story will always inspire me, as it really shows the power of pushing for change and never giving up.
How has the AKU Society changed over the two years you’ve been here?
I have seen a lot of changes over my past two years. When I started in 2014, our DevelopAKUre clinical trial was in its early stages with new patients attending for their first visit. We are now over halfway through and it’s been great to be part of this journey, see the progress and experience the excitement of the first potential treatment for AKU.
Another key change has been the expansion into community fundraising. It all started back in September 2015 when I was thrown in head-first by taking part in our London to Cambridge cycle and the Cambridgeshire Spartan race. September also saw the recruitment of Lydia, our first Fundraising Officer. Keen to expand our community fundraising, we hosted a coffee morning, a comedy night and our supporters took part in the Cambridge Half Marathon. These events were the perfect opportunity to raise lots of money and awareness for AKU and of course, have fun along the way.
My favourite memory was definitely our first International Patient Workshop in Liverpool. It really was a special moment meeting AKU patients from all over the world, many of whom had little or no support in their country. I also got the chance to meet some of our DevelopAKUre patients who I had supported while working as Admin Assistant. For me, the day really highlighted what the AKU Society is all about – building a strong community that support one another.
I would like to say a massive thank you to all the patients who have been a part of my AKU journey. Hearing your stories, challenges and achievements has been a huge motivation for me and I hope that AKU continues to get the care and attention it deserves. I look forward to keeping up-to-date on AKU news and clinical trial progress and wish you all the best for the future.