Passion and hope at the IRC

The immeasurable value of face to face meetings

by Raj Badiani, FSHD UK

I was given the opportunity to attend the FSHD Society's International Research Congress (IRC) in Milan this year and present the FSHD UK poster to share who we are, what we have done and our plans at this year’s IRC 2023. Since our group started two years ago, we have established a network of six clinical research sites, seen the first FSHD clinical trials launch in the UK, and are actively working to advance trial readiness and strategies to speed up access to FSHD treatments in the UK. This year's IRC provided a platform to share our progress with the broader community. Thank you to Emma Weatherly and the FSHD Global Research Foundation who supported me in being there in person.

This was a true gift as I was keen to learn more about FSHD from the experts. My knowledge over the past year has increased but it is still nowhere near what I'd like it to be. I also wanted to meet some of the key players in the FSHD world face to face. Sitting in a room of 150 FSHD-versed folks was, to me as a patient, immensely moving. Hearing the passion in the voice of each speaker about their interest and dedication to finding solutions and unraveling the mystery of FSHD gives me hope.

Whilst the in-depth science defeated me at times, what I found useful were the talks around the impact of the repeat counts versus disease severity, the ethnicity angle, and the continued search for a robust biomarker. It was good to have the key Industry teams at the IRC, as it helps to foster good relationships and understanding of  their perspectives as we head toward multiple clinical trials.

I particularly liked the Q&A after each presentation. Often, the questions asked help to clarify the doubts or unknowns in one’s own head. I cannot say I understood all these very technical elements, but I loved that anyone could ask anything of the experts and the answers given appeared (to me) to be honest and diligent.

I think the area of wider inclusion criteria for trials remains open, especially when a fifth of our patients who are non-ambulatory are unable to participate in the current trials. Inclusion of pediatric FSHD is equally important, and it was good to see that highlighted right at the beginning to set the tone on the urgency of this area.

The poster hall was filled with so many different angles on FSHD. I wished I could have had an expert walking me through it. It was wonderful to see all the poster presenters and each person answered questions with pride in their work.

Being at the IRC has given me ideas on areas we as FSHD UK need to focus on and it also helps me to shape how we may organize future conferences.  For the first time since we started two years ago, seven of our FSHD UK team members met in person in Milan!  A face to face, in person meeting is more value added than can be measured. I think the IRC is a must attend for anyone working in the FSHD arena.