A sense of belonging

by Raj Badiani, FSHD UK

This year’s FSHD Connect was the first one that I’d ever attended, and for me this started late on the Friday evening. Sadly, I had missed the welcome drinks reception, but fortuitously I met with three American ladies, and like me, for two of them this was their first time. We became immediate friends as we shared our FSHD journeys and empathized on our daily ailments.

This was the start of what became a general theme for the conference as a whole: that is, that “we are in this together.” Mark Stone’s opener the next day calling on us to “ignite the fire” and “let’s cure and beat FSHD together” gave me and the 200-plus nodding heads around the room a sense of belonging to a community or a family, as Mark calls it.

The breakout sessions had a good choice of topics, and I was torn on which ones to attend. I was pleased to see that two of these sessions were led by teenagers, and there was one on mindfulness meditation (a topic often ignored when dealing with physical disabilities).

The second-day sessions, of equal interest to me and I am sure to everyone there, were the panel discussions and Q&A with four pharmaceutical company researchers, who outlined the timelines on their up-and-coming therapies. Every single person in the room was fully attentive! It was also a pleasure to meet the pharmaceutical teams who were there every day and made time to catch up as needed.

The ambience throughout the conference felt upbeat, and I particularly liked that there were no complaints or moans. Everyone had a positive vibe.

It was an excellent event, well run, on time, and with superb content. I made new friends and additional connections. Most importantly, meeting people face-to-face added a different dimension to the virtual relationships of the past year.

I thoroughly recommend attending a conference with such an engaged community as ours. This is confirmed by the actions of my new-found FSHD friends from the Friday evening; one of them extended her stay, and another one is keen to ensure that her husband attends the next Patient Connect (2024) with her! There is so much to be learned and gained from being there in person, it would be a shame not to be there. I hope you can make it.