Lito Sousa seeks experimental treatment for rare neurodegenerative disease

Lito Sousa, a prominent Brazilian aviation influencer and creator of the 'Aviões e Músicas' channel, has been diagnosed with Creutzfeldt-Jakob disease (CJD), a rare and rapidly progressing neurodegenerative condition caused by prions. As the disease has no known cure and is invariably fatal, Sousa's family is urgently seeking access to experimental clinical trials.

His wife, Mila Seidl, is leading a campaign to secure a spot in ongoing research studies. Key targets include the ION717 drug trial by Ionis Pharmaceuticals and the PRiSM study sponsored by the Broad Institute of MIT and Harvard. The family is also coordinating with medical teams at the Mayo Clinic and seeking diplomatic support from the Brazilian government to facilitate international medical transfer or exceptional access to treatments in the United States and Europe.

Due to the rapid decline in his motor functions and vision, the family emphasizes that time is critical to ensure he remains eligible for trials before cognitive functions are compromised. Meanwhile, fellow content creators and friends have organized a collaborative effort to maintain the 'Aviões e Músicas' YouTube channel to ensure financial stability for his team during his illness.