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Virtually Unstoppable: A Global Experience

This year’s virtual Summit & Gala has proven that FAST truly is global. Over 1,700 people from 61 countries around the world tuned in to FAST’s Virtually Unstoppable Global Summit & mini-Gala. Friday’s Science Summit viewers in Japan watched the keynote speaker, Dr David Meeker, at midnight. Angelman parents in Lebanon and France joined, “lunch with friends” during their dinner. Australian registrants tuned in to the final presentations of the day with a cup of coffee in hand. Thanks to the virtual platform, anyone anywhere could participate. 

This year’s virtual Summit & Gala has proven that offering different language options is invaluable, especially for the more complicated Science Summit presentations. “Complex scientific talks would be next to impossible for non-native English speakers to understand without subtitles,” recognizes Noah Firestone, FAST Canada’s chairperson. In fact, 25% of viewers during Friday’s Science Summit presentations were watching subtitled videos.

Benedetta Sirtori, FAST Italy’s chairperson explains why a virtual event with translation was so important to the Italian community, “FAST Italy has worked so hard in trying to educate our Italian community the last three years and the virtual summit was the culmination of all that hard work. Most of the Italian Angelman syndrome community would never have connected to the virtual platform or asked for the videos to watch after the summit if they had not been in Italian. Now we have tons of messages, people were overwhelmed and willing to help….The Italian community was very impressed and is now more committed.”

Anthony Moisan, FAST France’s co-chair, expressed how important French subtitles were for the Francophone community, “Not only was this the first time that our community could get access to a clear and thorough review of what Angelman syndrome (AS) is all about and what the research routes are (thanks to FAST’s Chief Science Officer, Dr. Allyson Berent’s presentation), but also it was the first time the Francophone community could sense how much traction and momentum there is around AS research with so many labs and pharmaceutical companies entering the game.”

This year’s virtual Summit & mini-Gala had a profound effect on newly formed FAST Spain. Casilda Cebrián, board member of FAST Spain says, “The change in the Spanish community has been incredible! So many families are contacting us, interested in the cure for the first time and wanting to help. There is so much hope. Spain had 90 people register for the summit and a lot more are asking when we will have the [subtitled] videos on our YouTube channel.”

Melina Klurfan, Genetic Counselor for Casa Angelman in Argentina says, “Latin American countries tend to be left out of symposiums and scientific developments. Not only because we are physically far from the main research centers and clinical trials but also because of the language barrier. Thank you FAST for breaking this pattern and allowing us to access virtually the Science Summit with subtitled translation into our native language. For the first time, we have been able to witness such a wonderful event. COVID closed a door for us but FAST kindly opened the window to the Angelman world that we can finally be part of.”

This year’s virtual Summit & Gala has proven that, in the words of FAST’s chairperson, Paula Evans, we- our FAST community all over the world- are relentless and we are unstoppable!