Help Lito. An independent public-interest initiative
Connecting Lito's case with the people who study prion disease.
Lito Sousa, aviation educator and creator of Aviões e Músicas, was diagnosed with Creutzfeldt-Jakob Disease in August 2026. There is no proven treatment. Help Lito organizes verified information about his case and the disease so that researchers, physicians and institutions with relevant knowledge can reach his official team.
- What this site is
- A bridge between verified expertise and Lito's official team.
- What it is not
- Not a fundraiser. Not a medical service. Not an official channel.
01Who is Lito?
Thirty-seven years of making the sky make sense.
Lito Sousa is a Brazilian aviation professional. He started as an aircraft mechanic in commercial aviation, became a private pilot, and built experience across generations of aircraft. He specialized in Human Factors and Safety, the discipline that studies how people and complex systems fail together, and how to keep them from failing.
Then he did something unusual for a technician: he taught the public. Through Aviões e Músicas, one of the largest aviation education platforms in Brazil, he spent more than fifteen years turning dense technical knowledge into something anyone could follow. Turbulence. Engines. Why a wing works. Why an accident happened, and what changed afterward.
Along the way he helped thousands of people overcome their fear of flying, trained new professionals, and became a reference for an entire generation that learned aviation through his voice.
- years in commercial aviation
- 37+
- years making aviation understandable
- 15+
- Roles
- Mechanic. Pilot. Educator. Safety specialist.
02What happened
A diagnosis that moves faster than the search for answers.
Lito is a husband, a father and a friend to many. His wife, Mila Seidl, chose to share the diagnosis publicly because the family understood something quickly: this disease does not give people time to look for answers slowly.
The family has been adapting their home and preparing care. They are not asking for money. They are asking for verified knowledge, specialized contacts and real research, reaching them while it can still matter. The public timeline below is limited to what the family and team have shared.
Before 2026
An earlier diagnosis
Lito had previously been diagnosed with prostate cancer. This context was shared publicly by the family.
2026
Rapid neurological changes
Neurological symptoms appear and progress quickly, including loss of movement and visual deterioration. Other diagnoses, including encephalitis and autoimmune processes, are investigated first.
August 2026
The diagnosis becomes public
Lito's wife, Mila Seidl, shares publicly that Lito has been diagnosed with Creutzfeldt-Jakob Disease. The family reports that he remained lucid during the early updates, and that they are adapting their home for his care.
03The diagnosis
Creutzfeldt-Jakob Disease, in sixty seconds.
CJD is a rare, rapidly progressive, neurodegenerative prion disease. It is not an infection in the usual sense and it is not a cancer. It involves a protein in the brain folding into the wrong shape.
According to public health authorities, there is currently no proven treatment that stops or reverses the disease.
Ordinary social contact does not transmit sporadic CJD. Family members and people interacting normally with a patient are not at increased risk.
- 01
A normal protein
Every person makes prion protein (PrP). In its normal shape it is harmless.
- 02
Misfolding
In CJD, some PrP takes on an abnormal shape that the body cannot easily clear.
- 03
A chain reaction
Abnormal PrP induces normal PrP to misfold too. The process spreads through brain tissue.
- 04
Neurological damage
Nerve cells are lost. Coordination, vision, memory, speech and movement decline, often within months.
04Why time matters
This is why time matters.
Lito has experienced a rapid neurological decline and a significant loss of movement, while remaining lucid during the early public updates. CJD progresses in weeks and months, not years.
And this is why we are looking for the people who may know more.
05What research exists
This is serious. It is also being studied.
Prion disease is one of the hardest problems in neurology, and a small, specialized research community has spent years on it. Some of that work has reached early human studies. None of it is a cure. All of it is relevant to anyone evaluating Lito's case.
Research directions
- 01
Lowering the normal prion protein
The disease process depends on the body's own prion protein (PrP). Several strategies ask a simple question: if there is less normal PrP available, can the disease slow down?
- 02
siRNA
Small interfering RNA is a type of molecule that tells cells to make less of a specific protein. A PrP-targeting siRNA is now in a first-in-human safety study.
- 03
Antisense oligonucleotides
Antisense oligonucleotides (ASOs) are another way to reduce production of a protein. They have been studied for prion disease in laboratory models and in early clinical work.
- 04
Biomarkers and diagnosis
Tests that detect the disease earlier and track how it changes over time. Better markers help doctors diagnose sooner and help trials measure whether a treatment is doing anything.
- 05
Monitoring progression
Because CJD moves fast, research teams work on ways to measure decline precisely. This matters for patients, for families planning care, and for evaluating any experimental intervention.
A registered first-in-human study
Phase 1 · NCT07444580
PRiSM. PrP-targeting siRNA Safety & Mechanism Study
First-in-human Phase 1 study evaluating the safety, tolerability, pharmacokinetics and pharmacodynamic effects of a PrP-targeting siRNA in adults with symptomatic prion disease.
- Sponsor
- Broad Institute of MIT and Harvard
- Status
- Check official registryLast verified: August 23, 2026
Shown as information only. Nothing here states that Lito is eligible, has been accepted, or will receive any experimental treatment, or that the treatment works.
View official study recordWhere this research happens
Institutions involved in prion disease research, diagnosis, patient support or clinical investigation. Listing does not imply endorsement, partnership or contact.
- Broad Institute of MIT and Harvard
- Massachusetts General Hospital
- Mayo Clinic
- Columbia University Irving Medical Center
- University Hospitals Cleveland Medical Center
- Vanderbilt University Medical Center
- UCSF Memory and Aging Center
- National Prion Disease Pathology Surveillance Center
- CJD Foundation
- Prion Alliance
06Can you help?
Can your work, research or expertise help?
If you work in prion disease, neurology, RNA therapeutics, neurodegeneration, clinical research or a related field, your knowledge or your connections may be relevant. The request is for concrete, verifiable information, sent to the official channel.
How information reaches the team
- 01
You identify something relevant
A study, a protocol, a specialist, an institution, a trial, a publication. Something a specialized team could evaluate.
- 02
You write to the official channel
Directly, or through the structured form on this site, which prepares an email you review and send yourself. Help Lito does not receive it.
- 03
Lito's team evaluates it
The official team and the physicians around Lito decide what is relevant. Help Lito has no role in that decision.
What is being sought
- Verified treatment or protocol information
- Clinical trial information and eligibility criteria
- Research opportunities
- Specialist contacts
- Institutional connections
What should not be sent
- Unverified or miracle treatments
- Speculation, rumors or conspiracy theories
- Supplements, diets or alternative cures
- Mass messages or chain messages
Channel 1
Contact Lito's official team
Published by Lito's team for concrete, verifiable information that may help his case. This channel does not belong to Help Lito.
- Verified scientific information
- Clinical research
- Treatment information
- Clinical trial information
- Specialist connections
- Institutional opportunities
Channel 2
Contact the Help Lito initiative
For matters about this website, which is independent and run by one person. Nothing sent here reaches Lito's team unless you ask for it to be forwarded.
- Website issues
- Corrections
- Content removal requests
- Legal concerns
- Ownership or administration of the site
- Questions about the initiative
Responsible: Bruno Silva. Named for accountability, not promotion.