A long journey but worth it

Face-to-face meetings add an extra layer of feelings and motivation

by Ricardo Gerpe, FSHD Spain

I had decided to go to Orlando for the FSHD Connect conference although due to my work responsibilities, I could only attend the Sunday session. It was a 20-hour journey from my home in Spain and by the time I arrived at the Waldorf Astoria, I was asking myself if coming for just one day was worth such an exhausting trip.

The moment I walked into the conference ballroom, I knew I had made the right decision. I was in a room with hundreds of other people with FSHD and I immediately felt connected, deeply so, with all of them. I knew several people from previous virtual meetings like the Wellness Hour, and this was the perfect occasion to see them all in three dimensions, and this was great.

Virtual meetings provide the unbeatable benefit of allowing people from anywhere to participate, regardless of location and time. It is convenient for planning and executing activities or for sharing information. But face-to-face meetings add an extra layer of feelings and motivation.

Additionally, having the option to talk to the pharmaceutical industry representatives and researchers was truly amazing. All of them said that meeting the individuals that would benefit from their work was inspiring and energizing.

Just these two things I’ve mentioned made the trip worthwhile.

I was wearing two hats (actually three if we count the orange one for World FSHD Day!). One hat was as a patient, interested in all the new things presented here and in all the people I could meet. The second hat was as a representative of FSHD-Spain, the patient advocacy group in my country, so I kept an eye open on what is relevant for our organization and how can we both benefit from and contribute to common goals.

In that sense, the actions we take in the World FSHD Alliance, which encompasses two dozen FSHD associations from around the globe, are aimed at common objectives. There are no borders for this illness. We come from different degrees of organizational development but we share similar obstacles and the same ultimate goal, to help patients and support finding a cure.

I returned back home energized by what I saw, full of hope that there will be a cure at some moment and with work to do for the World FSHD Alliance, aiming to reach our objectives and optimize our resources.

I would like to thank the FSHD Society for having made this possible and for the continuous help to all of us. I wish I could put into words how grateful I am to all of its staff.