“It makes you rethink life”: doctor speaks about Lito Sousa

Influencer Lito Sousa's battle against Creutzfeldt-Jakob disease gained a new chapter on Wednesday (26). On the day Palmeiras celebrated its 112th anniversary, the club showed a message recorded by Lito prior to the 3-0 victory over Santos in the Copa do Brasil.

In the video shown on social media, Lito Sousa compared the fight against Creutzfeldt-Jakob disease to a football comeback. After sharing that he was told his chances were slim, the influencer drew on the club's history to state that he does not intend to give up.

“But there was a team I once saw turn a game around. They ended the first half losing 3-0 and, at the 53rd minute, turned it into a 4-3 win. That is something I learned from Palmeiras: never give up,” he declared.

Lito stated that, for this reason, he will never give up. In the video, he also celebrated regaining movement in the fingers of his left hand, which, according to him, had remained immobile just a few days earlier.

The influencer's wife, Mila Seidl, was at Nubank Parque to represent him. In an interview with TV Palmeiras, she said Lito was listening to the match and asked for support for the mobilization seeking access to an experimental drug.

For neurosurgeon Pedro Pierro, scientific director of Sechat, the speed at which the disease compromises neurological functions makes the diagnosis particularly difficult for the patient and their family members.

Disease exhibits rapid progression

Pedro Pierro explains that prion disease progresses rapidly and currently lacks any treatment capable of stopping its advance.

“The major problem with prion disease is that it progresses very quickly and is incurable. A person does not just receive a diagnosis; they receive a sentence. Within a few weeks, they may no longer recognize their own child, progress to dementia, and subsequently reach advanced stages of the disease. This is the progression of the disease,” he explains and laments, unfortunately.

The neurosurgeon also highlights Lito's role in science communication. Known for the channel Aviões e Músicas, the influencer built an audience of millions of people explaining aviation accidents, safety procedures, and technical aspects of aviation.

“When I think of Lito, I think of someone who built his own legacy through science. He explains air accidents, shows how each situation occurs, and always relies on evidence. Seeing him face a disease like this is something that makes us rethink life itself,” Pierro states.

Mila attended the stadium at Lito's request

Mila shared that she initially did not intend to attend the match due to the difficult time the family is facing. That decision changed when Lito learned that she had been invited.

“When Lito found out I had been invited, he said I had to go. He is a very passionate Palmeiras fan,” Mila told TV Palmeiras.

During the interview, she mentioned that her husband was following the broadcast.

“He is listening to the game,” she said about Lito Sousa. 

Before the match, Palmeiras displayed a video message recorded by Lito Sousa on the big screens. The influencer linked his battle against the disease to the comebacks he witnessed as a supporter and stated that he learned from the club to never give up.

Palmeiras defeated Santos 3-0, with two goals from Flaco López and one from Andreas Pereira. The match took place on Wednesday (26) at 9:30 p.m., according to the match report published on Palmeiras' official website.

Mila calls for mobilization for access to medication

The family is attempting to gain access to experimental treatments being researched by Ionis Pharmaceuticals and the Broad Institute in the United States. According to Mila, Lito was unable to join the two clinical study groups they approached.

The alternative now being pursued is compassionate use, which allows, under certain conditions, the provision of an experimental therapy outside of a clinical trial.

“We just want to at least have a chance,” declared Mila.

Lito Sousa's wife also asked the public to send messages to the institutions responsible for the research.

“We need people to go on Instagram and send emails to Ionis Pharmaceuticals and the Broad Institute, tagging #MaydayLito. It is an aviation SOS, a cry for help,” she stated.

The expression “Mayday” is used internationally in aviation to indicate an emergency distress situation and request immediate assistance.

Wife highlights support from Itamaraty

Mila told TV Palmeiras that the family received support from Itamaraty in their effort to establish contact with foreign institutions. According to her, diplomatic involvement adds weight to the request made on behalf of a Brazilian citizen.

“We received support from Itamaraty. People might say, ‘It’s just one person.’ But this is humanitarian aid. In the same way Itamaraty steps in to help a refugee, when there is a cause of a Brazilian who needs diplomatic backing, it engages in international relations,” she stated.

Diplomatic efforts, as Mila explained, aim to open channels of communication with the institutions responsible for the medications. Any eventual authorization, however, depends on the companies, researchers, and required regulatory approvals.

Family seeks access to two research studies

Ionis is developing ION717, an antisense oligonucleotide designed to reduce the production of the prion protein. The experimental medication is administered intrathecally, directly into the cerebrospinal fluid surrounding the brain and spinal cord.

The PrProfile trial, identified as NCT06153966, is in Phase 1/2a. The study evaluates the safety, tolerability, and pharmacokinetics of ION717 in individuals with prion diseases.

Ionis' expanded access policy establishes criteria such as disease severity, lack of alternative therapies, available safety evidence, product supply, and potential impact on ongoing clinical development.

Currently, ION717 does not appear on the list of expanded access programs offered by the pharmaceutical company.

The family also approached the Broad Institute, which is developing a therapy based on RNA interference, known as siRNA. The strategy aims to lower the production of the prion protein in the brain.

The PRiSM study entered Phase 1 in April 2026. According to the Broad Institute, the trial plans to enroll 15 symptomatic patients who will receive a dose of the therapy and another 15 participants in an observational group, without drug administration.

Neither therapy has demonstrated proven efficacy against Creutzfeldt-Jakob disease. The studies are in early phases, primarily assessing safety, tolerability, and dosing.

Ionis states study is not accepting new participants

Following the mobilization in support of Lito Sousa, Ionis Pharmaceuticals issued a statement in which it acknowledged the urgency expressed by the influencer and his family. The company stated that it is handling the matter privately, in accordance with its medical and regulatory procedures.

“Ionis recognizes the urgency expressed by Lito Sousa and his family following his diagnosis of Creutzfeldt-Jakob disease and appreciates the outpouring of support from his community. We do not publicly discuss individual patients or their medical conditions and are handling this matter privately in accordance with our established medical and regulatory processes.”

In the statement, the pharmaceutical company explained that ION717 is being tested for the first time in individuals with prion diseases. As an early-stage clinical study, the trial aims to evaluate the drug's safety, tolerability, and biological activity.

Ionis stated that the clinical trial is no longer enrolling participants and that the safety and efficacy of ION717 have not yet been established. The drug is also not currently available through an expanded access program from the company.

“Ionis remains committed to conducting research responsibly and ethically, moving with urgency to determine whether ION717 could benefit people living with prion disease. We are grateful to all who are helping to raise awareness of this devastating disease,” the pharmaceutical company concluded.

What is Creutzfeldt-Jakob disease

Creutzfeldt-Jakob disease is a rare neurodegenerative condition caused by the abnormal folding of proteins called prions. These misfolded proteins induce other proteins in the brain to adopt an abnormal shape, triggering a progressive process of neurological degeneration.

According to the U.S. Centers for Disease Control and Prevention, the estimated incidence is one to two cases per million people per year.

Symptoms may include memory loss, vision changes, difficulty walking, involuntary movements, behavioral changes, and cognitive decline. Currently, care is focused on symptom management and supportive care for the patient.

In Brazil, Anvisa provides compassionate use programs for patients with serious, life-threatening conditions and a lack of therapeutic alternatives. The request must be submitted to the agency by the drug's sponsor or an authorized representative organization.