The Foundation for Angelman Syndrome Therapeutics (FAST) teams with GTS Translation to localize their annual science summit in French, Italian, and Spanish.
What is Angelman syndrome?
Angelman syndrome (AS) is a neurogenetic disorder which causes delayed development, challenges with speech, balance, learning, and memory. Most people with AS also experience seizures. AS was named for Harry Angelman, a UK pediatrician who first reported children with this disorder in 1965.
While most people have never heard of Angelman syndrome, the disorder affects approximately 1 in 15,000 people in the general population. Some scientists believe that AS has the greatest potential for being cured when compared to other neurogenetic disorders. That’s why so many leading pharmaceutical companies are stepping up research to find cures for AS. A partial list of sponsors who support these efforts include Keder Solutions, Ovid Therapeutics, Ultragenyx Pharmaceutical, PTC Therapeutics, Genetx Biotherapeutics, Roche, Biogen, StrideBio, and Taysha Gene Therapies.
FAST is run by an all-volunteer board of Angelman syndrome (AS) parents and professionals dedicated to finding a cure for AS and related disorders through the funding of an aggressive research agenda. The foundation is committed to assisting individuals living with Angelman syndrome to realize their full potential and quality of life. FAST’s goal is to bring practical treatment into current medical practice as quickly as possible. The hope is that grants will lead to additional research support from government agencies, other funding sources and organizations around the globe. FAST is served by two boards: the board of directors and the scientific advisory board.
FAST is global. There are active FAST organizations in Australia, Canada, France, Italy, Spain, and the UK.
FAST enjoys the support of famous celebrities who love the AS cause and come to the FAST Global Summit & Gala, which is held every year (more on that later). The list of celebrities includes Colin Farrell (who himself is dad to a child with AS), Vincent D’Onofrio, Retta, Christina Applegate, Jai Courtney, Wilmer Valderrama, Josh Peck, and others.
The FAST Global Summit & Gala
Since 2008, the annual FAST Global Summit & Gala is held in December at the Hyatt Regency Chicago in Chicago, Illinois. The annual FAST Global Summit & Gala features a science summit, educational workshops, AAC carnival and a star-studded gala recognized as Chicago’s largest celebrity fundraiser. One hundred percent of the money raised at the Gala benefits research for Angelman syndrome. The Science Summit speakers focus on the latest developments in AS research, providing real-time updates on current and upcoming trials, providing the opportunity to ask questions directly to those developing therapeutics. The Educational workshops provide parents, caregivers, therapists and educators with information and knowledge about services that can help improve the quality of life for individuals with AS and those who care for them. The FAST Gala is Chicago’s largest celebrity fundraiser, attended by some of the actors and celebrities mentioned previously.
In year 2020, due to the COVID-19 virus, FAST decided to hold Virtually Unstoppable, the first virtual FAST Global Summit & Gala. The Virtually Unstoppable event was a jam-packed weekend full of research and clinical updates, educational and best practices seminars, access to vendors and Angelman-specific resources, opportunities to network and mingle, opportunities to win some amazing prizes, and appearances by Actor Colin Farrell and the 7th Heaven band.
The videos were streamed directly from the virtual platform. FAST had a state of the art virtual platform that resembled the Hyatt in Chicago where we usually host the Global Summit & Gala. Registrants could navigate the platform to find specific resources and visit the vendor booths, as well as of course participate in the Science Summit as well as the Educational Summit. Networking opportunities happened at Lunch with Friends and the Big Bar on Friday, and at the mini-Gala on Saturday night.
There were different rooms available on the platform (such as the Science Summit room, Educational Summit room, Resource Room, and Vendor Fair). Friday’s Science Summit was meant to feel live so we played it in real time. All of the presentation videos were stitched together so when the attendees entered the Science Summit room on the virtual platform they were given the option of viewing the presentations in English, Spanish, French or Italian. After the event the videos were separated and posted as solo presentations so visitors were able to choose the video by name and language.
Attendees interacted with the platform on all types of devices- phones, laptops, desktops, ipads. We made sure that the platform was friendly for every device.
This is the first year we have done real time translation of the Science Summit. In the past the presentations were translated after the fact and posted on our YouTube channels. Because the event was fully virtual this year, FAST knew we would have registrants from all over the world tuning in. We wanted to make sure our audience could fully engage and understand the complex scientific information. Having that information in your native language makes it much more comprehensible.
Localization project beginnings
In early October, 2020 Amelia Beatty, an AS mom and member of the FAST board of directors, contacted leading professional translation services company GTS Translation Services, among other vendors, to help in the localization project. The project requirements were challenging: FAST had about 20 scientific/ pharmaceutical/ medical presentations that that were between 10 and 20 minutes each, as well as a few presentations by Dr David Meeker, keynote speaker, and Dr Allyson Berent, FAST’s chief scientific advisor, which were 40 minutes in length. FAST wanted to have all captioned videos submitted to their platform host by November 13th. Presenters were asked to submit their videos two days before the deadline. The videos were to be subtitled in French, Italian, and Spanish.
Beatty said that “we selected GTS for this project after having interviewed several other translation companies who proposed a much longer timeframe, saying that if they use actual humans to translate it will take at least three weeks. GTS was the only translation company that committed delivery of human translation withing the delivery deadline.”
David Grunwald, managing director of GTS Translation Services, said that “the workflow we proposed for the FAST summit was professional human translation with no use of machine translation. Using machine translation for video subtitles can yield poor results, as the structure of spoken language does not always lend itself well to translation software. This is especially true when using MT to translate technical medical and scientific subject matter.”
The most difficult challenge was the deadline. Localizing 400 minutes of video into three languages in only two days was a very tough proposition from the start.
To meet the deadline, GTS assembled a team of 5-6 translators per language, who worked around the clock to get the translations done. Videos were uploaded to a secure FTP site and then transcribed into SRT files. These files were then submitted to the translation teams.
We mostly used the Handbrake software application for burning the captions into the videos. Adobe Media Encoder was also used for a few videos which required more advanced editing. One of the things we needed to verify is that translators saved the files in the correct UTF encoding format. We also needed to maintain the time stamps. However, text expansion in some languages required us to adjust the time stamps in order to avoid clogging up the screen with excessive texts.
“Besides the extremely tight deadlines, another challenge was that some of the speakers were not native English speakers, complicating the task of transcription. Luckily, we were able to draw on our staff of experienced medical transcribers who managed to do a good job despite the difficulties. Our translators also assisted in this task, checking the videos concurrently with the translation to make sure that the transcriptions checked out. Another thing that worked in our favor was that fortunately, the actual deadlines were somewhat more flexible. We received the videos in several batches which reduced a production bottleneck,” said Grunwald.
“The Summit and mini-Gala went really well. The Friday Science Summit was incredible. We had 1730 registrants from 61 countries around the world!! Our virtual platform was incredible, everyone was extremely impressed. Our Italian, French and Spanish communities loved that they could watch the science presentations in their native language (because let’s be real, AS science is difficult enough in your native language!). We received requests for Portuguese and Russian for next year. The weekend culminated in raising $2.2 million for Angelman syndrome research at the virtual mini-Gala! A big thanks to GTS for this project. I know it was big and we had a tight deadline but GTS really pulled through to give us quality translations in a short amount of time. We are very pleased with the end result,” said Beatty.