Jordi Sabaté, known as the 'YouTuber fighting ALS,' recently interviewed Penelope Cruz for his new podcast, marking a significant milestone in his campaign to raise awareness and funds for ALS research.
An Engaged Spokesperson
Jordi is very active. His mission, as he puts it, is to help others and advance the cause of ALS, often with humor, talking about motivation and life philosophy . In addition to sharing the daily reality faced by patients and their families, Jordi addresses the heavy and often overlooked financial aspect that many struggle to confront. He actively advocates for raising funds for research as well as for political awareness in Spain.
“ALS has taken away my ability to move my body, speak, eat, drink, and even breathe.” But he can express himself, and he does so in multiple ways: through his smile and sparkling eyes, and through his synthetic voice, which verbalizes what he wants to say in real-time, using an eye gaze-enabled speech generating device.
A Voice to Advocate
The voice Jordi uses is not just any voice; it is his own, core part of who he is, created by Acapela Group based on existing recordings. This has allowed, with the voice banking solution ‘my-own-voice,’ to create a digital version of his original and now-lost voice, enabling him to continue to connect and communicate orally with those around him.
‘They have recovered my voice after 6 years of being mute, and I can speak with my eyes using my natural voice. Technology can be wonderful’, said Jordi. Watch the enthusiastic video Jordi made about his new synthetic voice.
With his voice embedded on the AAC device, a TD I-Series from Tobii Dynavox – and supported by Qinera, Tobii Dynavox’s local partner – he remains active online and is present on many social networks. In five years, he has given nearly 200 interviews in the media. In April 2020, he created a YouTube channel that bears his name. Four years later, he has published 526 videos and has 100,000 subscribers, not counting the other platforms on which he is active. The goal of the channel is to generate revenue to help fund research on ALS. One of his most viral video is titled: “In Two Minutes, I’m Dead.”
Raising Visibility and Awareness to “offer hope against ALS”
The inaugural episode of Jordi’s new podcast featured a 45-minute interview with Penelope Cruz. Their conversation was deeply personal, covering both everyday experiences and more philosophical questions about life journeys. A happy ending with the actress agreeing to become the godmother of the association and whispering the names (Javier, Pedro, and more…) of potential future podcast guests. Stay tuned!
How to Support the Cause
In the meantime, watch the interview, support Jordi’s efforts by watching his YouTube channel and enjoy the products he is endorsing, always for the benefit of research to “offer hope against ALS.”
Follow Jordi Sabaté Pons
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