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A man smiles broadly out at the camera. He has short dark hair and a neat, short beard. This is Lito Sousa.

Lito Sousa – CJD Diagnosis and Queries

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:

A statement from the Broad Institute: Thank you to everyone who has reached out in support of Lito Sousa. We are in contact with his team to help evaluate his options.  Prion disease is rare and devastating, and for now there are no good treatments. We are working hard to change that, but the research - including criminal trials - is still in early stages.  We're moving as fast as we can.  Tens of thousands of people have expressed their care and concern for Lito.  We don't know if we can help, but we will try.

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.