In January, Archie travelled to Paris to share his story on an international stage at the BioMarin Conference. Read what happened behind the scenes and how his interview unfolded.
Hi, it's Archie! Recently, I was invited to the BioMarin Conference in Paris to talk about living with MPS IVA Morquio and the clinical trial for Vimizim.
The journey
On departure day, mum and I left home early, so we could catch the train to London and get onto the Eurostar to Paris. Once we arrived, we met with Maria from the BioMarin patient advocacy team who was going to be interviewing me the following day.
The next morning we woke up bright and early to have a relaxed breakfast, only to discover that all the hot food had already vanished as the other conference attendees had an 8am start. Luckily, we did still get proper French croissants!
The interview
Since my slot on the agenda wasn't until later in the day, we had a free morning and hoped to wander the streets of Paris. Unfortunately, the weather had other ideas; it was so wet and rainy that we decided against it.
Once the time came, getting mic'd up was a little nerve-wracking as it's been a long time since I spoke in front of so many people.
There were nearly 400 attendees from over 80 different countries!
However, as soon as I got on stage, my previous experience of speaking for large groups and performing for an audience kicked in.
I felt really calm and confident.
My interview was around half an hour long. We covered many different topics from the little I remember of being diagnosed and the early years of my life through to starting my infusion on phase one of the clinical trial for Vimizim.
We discussed all the battles that we had with NICE about getting Vimizim available on the NHS.
I also enjoyed talking about my university and current working life being both a boccia player and coach, as well as playing powerchair football.
The impact
My interview was really well received and I had many further chats with attendees after the session.
I talked to delegates from Brazil, Canada, Germany and Italy. We chatted further to Maria and her colleagues; it was interesting to learn that they had a patient advocacy team. In return, I gave them all a crash course in boccia.
Reflecting on interviewing Archie, Maria said:
Archie was brilliant! I was much more nervous than he was. The feedback was fantastic too. Everyone responded to his message of independence, in terms of his daily life and career and not to be labelled as a patient - this is a message that our staff need to hear!
All in all, I am pleased I was able to help the staff at BioMarin by sharing my real life experience of being on their treatment.
I hope to have given them all useful information to take back to their own countries.
After the talk, we travelled straight home in order to make it back for my brother's birthday but I am really looking forward to hopefully getting similar opportunities like this in the future.
Read more
If you are intrigued to learn more about Archie and how he mastered his journey from being a successful boccia player to founding his own coaching business...
