Digital influencer and former aviation mechanic Lito Sousa, diagnosed with Creutzfeldt-Jakob disease, released a request on August 23, 2026 for access to an experimental treatment for the disease.

In his first public statement after his wife’s announcement of the condition, the content creator shared a video on Instagram. In the recording, made in English, he requests to be included in an experimental treatment program researched by Harvard University.

Creutzfeldt-Jakob disease (CJD) is a rare, serious neurological condition that progresses with impressive rapidity, severely impacting patients. Mila Seidl, Lito’s wife, reported that the disease progresses quickly, causing the influencer to lose part of his vision in just one day.

In the video, Lito Sousa said, “Hi, my name is Lito Sousa and I have an urgent appeal for you. Please listen carefully to the following message. This is an urgent appeal to Ionis Pharmaceuticals, the Broad Institute, Harvard and the Mayo Clinic.”

Learn more: Lito Sousa releases video and calls for experimental study against Creutzfeldt-Jakob

Next, Ewandro Magalhães, specialist in international communication and storyteller, explains the situation. He stated: “This is an urgent appeal to Ionis Pharmaceuticals, the Broad Institute, Harvard and the Mayo Clinic. Brazilian influencer Lito Sousa is fighting Creutzfeldt-Jakob, a rapidly advancing and mostly fatal disease for which there is still no standard treatment protocol.”

He continued, saying that the family is urgently seeking Lito’s inclusion in an experimental trial. According to Ewandro, “Two studies could help, the details are on the screen. Lito has millions of followers whose lives he has touched in many ways. Including him in these studies will give him a fighting chance while bringing global attention to the research. Please review his case urgently. And if this has appeared in your feed, please share it widely. Be sure to tag the institutions mentioned in the captions. Every minute matters. Thank you very much in advance.”

The mobilization of followers for a promising treatment

Before the video was released, Lito’s admirers had already started a campaign on digital platforms, with the aim of getting the influencer to participate in the experimental study of the drug ION717, developed by the pharmaceutical company Ionis Pharmaceuticals.

On the same topic: Experimental technique with infrared light destroys up to 99% of cancer cells in the laboratory

According to information shared on Instagram, the family considers two studies to be promising, but both are not accepting new volunteers at the moment.

One of the studies is associated with Harvard University, in the United States. The other is a multicenter program, with research being carried out in Paris, France, as well as Germany and England. Mila Seidl mentioned that this second study is at a more advanced stage.

Lito’s wife confirmed that she has already contacted the researchers responsible for both study fronts, looking for a way to include the influencer, even if this means seeking an exception to the participation criteria.

Full coverage: Latest News (EN)

Mila stated in the video: “I have a 0% chance, but if I have a 1% chance anywhere, we want that 1%.”