This week’s blog is written by our trustee and AKU patient, Tony Esmond, who recently took part in Sanofi‘s This is Rare Campaign.

To mark Rare Disease Day, Sanofi launched their This is Rare Campaign which united rare disease patients, patient group representatives, and healthcare professionals at the iconic Abby Road Studios to share their experience through music and song under the guidance of world-renowned vocal coaches and presenters, Carrie and David Grant MBEs.

Give the song a listen here!

Tony talks us through his experience of being involved in the campaign below:

It all started with an email from Philippa at Beacon asking me if I would like to join a project to help raise awareness about rare conditions. Two things caught my attention, raising awareness of rare conditions and doing something that I enjoyed, singing. I am a member of a choir, which led to Michael at the AKU Society suggesting to Philippa that she should get in touch with me.

Philippa’s email explained that the Rare Choir was singing an adaptation of This is Me from The Greatest Showman. There would be two virtual rehearsals, followed by an in-person recording on the 26th of January. It was when I looked at the venue that I wondered what I had agreed to do, with the venue being Abby Road Studios! What an opportunity though.

The 26th arrived and I made my way to Abbey Road. As I arrived, I was greeted by members of Sanofi. Straight away there were photographs outside the studio and on the iconic zebra crossing. We then made our way to the studio where I had the opportunity to meet the other participants living and working with rare conditions.

We were all busy chatting when a familiar voice said ‘Morning, time for us to start!’

It felt so surreal being in Abbey Road with Carrie and David standing in touching distance in front of you. The day literally flew by. All the time we were being recorded for a short feature film, but you weren’t really aware of the cameras. David and Carrie put us at ease straight away. The singing started, the excitement grew, and Carrie and David started smiling broadly. They then proceeded to tell us how good we sounded and what a relief that was! The whole process was really interesting with us singing and recording the song in sections. Throughout the day I was interviewed to tell my story about what it was like living with AKU, my diagnosis, and my hopes for the day.

Once we had finished recording, it was put together and we got to listen to it. Carrie told us not to be surprised as it was really good and yes it was us! As the song was playing you could see people looking around with a shocked look on their faces as it was hard to believe it was us! The day finished with us singing through the song and a final filming of the choir ready for the launch of the song on Sanofi’s YouTube channel.

It really turned out to be a fantastic experience and what a way to promote rare conditions! A big thank you to Sanofi for organising the event and Carrie and David who were such lovely people and so easy to talk to.