Update posted 6 October 2026
It is with great sadness that we have learned of the death of Lito Sousa. The CJD Support Network sends heartfelt condolences to Lito’s wife, Mila, their son, and all who loved and admired him.
Since sharing news of his diagnosis, Lito’s courage, openness and determination to raise awareness touched people around the world. We are grateful for the awareness he helped bring to prion disease and for the support shown by his community during such a difficult time.
Our thoughts remain with Lito’s family and friends as they navigate this profound loss.
If you are in the UK and have been affected by prion disease, we are here to support you.
Original Post
The CJD Support Network was saddened, as we always are with any diagnosis of a prion disease, to learn of Lito Sousa’s CJD diagnosis. Lito is an internationally respected aviation specialist based in Brazil, with a significant YouTube presence promoting a positive and safe aviation culture. His diagnosis has attracted international attention and is being covered by CNN Brasil. We would like to send our empathy and support to all those affected by this news, and especially to Lito, his wife Mila, and their son.
The Network has received several messages from Lito’s supporters who are searching for hope. We want to let people know that the CJD International Support Alliance, of which we are a proud member, has been in communication with Lito and his family. Lito made a direct video appeal to several US institutions, and we can include their statements here.
From the Broad Institute:
From Ionis: Ionis prion community update – August 2026 vF
Whilst the CJD Support Network is unable to provide any further information, if this news has affected anyone in the UK, and you would like more information or to speak to someone, we are here via telephone or email.
We continue to be so grateful to all those affected by prion diseases who work so hard to raise awareness of these rare and devastating diagnoses.
