As well as being an ambassador for the Huntington’s Disease Youth Organisation (HDYO) Ashley Clarke is an advocate for the HD-Community Advisory Board (HD-CAB), a group that represents the patient voice in the design and conduct of clinical trials.
Following an HD-CAB advisory board meeting with uniQure in 2022 Ashley was invited to uniQure headquarters in Amsterdam and subsequently asked to record her story in video.
Daniel Leonard, Senior Director of Global Patient Advocacy at uniQure explains “For us here at uniQure, the patient story is vital to the work we do. Ashley came to speak to our staff and graciously agreed to create a video for us highlighting her journey”.
This took place in Northern Ireland, where she lives, and in the HDYO Meeting back in March, Daniel suggested Ashley to visit their Head Office in Amsterdam. Both the photoshoot and the visit happened in May.
Ashley describes the experience as unforgettable. “When I arrived at the office, I was treated like a VIP. I got to meet several staff members and go on a tour of the laboratory. And yes, I got to wear a super cool, official UniQure lab coat. It blew my mind seeing these scientists working on a treatment for Huntington’s Disease!” Even if they don’t have a treatment yet, Ashley knows they are “working so incredibly hard.”
Ashley believes this type of opportunity is really great for the community. “We need to understand the science, the processes involved and how hard it is to get through each stage to get a treatment to market. The researchers pour their heart and soul into this”. On the other hand, Ashley says “scientists need to understand that we are real people. We’re living, suffering, scared and hopeful. We have lost loved ones. We are scared for our future, and we feel as if we are running out of time.” “Most importantly, we need to work together to beat this disease.”
Referring to the HD-Community Advisory Board and Ashley’s advocacy work, Daniel Leonard has this to say “Thank you so much for creating forums for the patient community and industry to connect. It ends up going in wonderful directions we couldn’t have guessed! And Ashley, what a pleasure it was working with you. You’re making a difference”.
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