I’ve been staring at a GoFundMe page for 6 days now, and I can’t stop thinking about the word “storybook.”
That’s how someone described the ending to Mike Melgarejo’s story. Mike has advanced ALS. Four months after getting Elon Musk’s brain chip, someone who claims to be his friend created an emergency fundraiser because Mike was, in their words, “ready to give up on life.” The campaign described a man in complete crisis — mentally, physically, financially, emotionally. Then a Neuralink executive donated three thousand dollars, someone posted about a video game integration that doesn’t appear to exist, and this was called a “storybook ending.”
I keep returning to that phrase because it reveals something about how we’re being asked to see this technology. Not as experimental brain surgery on desperate people with terminal diagnoses, but as a story with narrative beats and happy endings. Not as thirteen human beings volunteering their minds and bodies to advance science, but as characters in Elon Musk’s vision of the future. The patients who thrive become protagonists in promotional materials. The ones who struggle disappear from the narrative entirely.
This is Part 4 of my investigation into Neuralink, where I try to do something the company apparently can’t be bothered with: keep track of what’s actually happening to the people who volunteer to have electrodes threaded into their brains. What I found isn’t a storybook. It’s a mess of scattered information, missing patients, and a concerning pattern of opacity around the most vulnerable participants. When you can’t track outcomes, you can’t see patterns. When you can’t see patterns, you can’t protect the people who come next.
So I built a registry. Because someone had to.
What Transparency Should Look Like
If you’ve ever looked up a medical study on ClinicalTrials.gov, you know what transparency looks like: enrollment numbers, trial sites, adverse events, regular updates. It’s the baseline for accountability in medical research, how future patients make informed decisions and how regulators spot safety problems before they become catastrophic.
Neuralink isn’t providing this. They announce patients inconsistently, sometimes the same day as surgery, sometimes months later, sometimes not at all. The official trial registry exists but it’s sparse, vague, and often months behind what’s actually happening. When I Google “Neuralink patient 4,” the search literally returns “no publicly known patient 4” as if this person doesn’t exist, even though the patient numbering tells us they must. Google is confused. I’m confused. And if you’re trying to make an informed decision about experimental brain surgery, you should probably be very confused about why the company can’t seem to keep track of who they’ve implanted and what happened to them.
So I’ve decided to create what should already exist: a systematic compilation of publicly available information about everyone who’s received a Neuralink implant. This matters because these aren’t average research participants. They’re people with quadriplegia who can’t move their limbs, people with ALS who are progressively losing the ability to walk, speak, eat, and eventually breathe. When Neuralink offers even the possibility of regaining communication or independence, it must feel like a lifeline. That desperation makes transparency critical. These patients deserve to know what happened to the people who came before them. When things go wrong for people this vulnerable, the consequences are permanent.
The Patient We Can’t Find
Most Neuralink patients have a pattern. They’re on X with brand new accounts created right around surgery, often with usernames that reference the technology or the company. They post regular updates about using their implants, playing games, controlling cursors with their thoughts, drawing pictures, communicating with family. The updates are universally positive, grateful, enthusiastic about what the technology has enabled them to do.
Patient 4 doesn’t fit this pattern at all. According to publicly available information, Mike Melgarejo received his Neuralink implant around February 2025. He has advanced ALS. Unlike every other U.S. patient, Mike has no public social media presence. No X account. No Instagram. Nothing.
Which would be fine if he were simply private, except Mike does appear in Neuralink’s promotional materials. In the company’s summer funding update video, there’s footage of Mike talking enthusiastically about how the implant has enabled him to work full-time to support his family. Neuralink features him in their pitch to investors. But nowhere else can I find any trace of his experience, any updates, any engagement with the community every other patient has joined. The man exists in Neuralink’s promotional ecosystem but nowhere in the actual patient ecosystem. That’s odd enough to notice.
Then in June 2025, four months after his surgery, a GoFundMe appeared. The language stopped me cold: “He’s ready to give up on life, people. Not an understatement. Everything has been taken from him. He’s not in a good place mentally, financially, physically, or emotionally.”
The campaign included screenshots showing Mike asking for rent money in what looked like Discord chats. “I hate to ask this, but I’m stuck in an embarrassing and tight spot. Can I borrow some cash? Rent’s coming up and we’re short. I’m so sorry for asking.”
It raised over $21,000 from multiple donors, including a contribution that made me stop: $3,000 from Shivon Zilis, Neuralink’s Director of Operations and Special Projects and the mother of three of Elon Musk’s children. One of the most senior executives at the company personally donated three thousand dollars to an emergency fundraiser for a trial participant who was in crisis four months after receiving an experimental brain implant from the company she helps run.
Look, I understand impulse generosity and wanting to help someone in need. But when you’re a senior executive at the company running the trial and a participant needs emergency rent money four months post-surgery, that’s not a feel-good story about corporate compassion. That’s a red flag about institutional support. Why is a multi-billion dollar company led by the wealthiest man in the world responding to participant crisis with a personal donation from an executive rather than comprehensive trial support built into the protocol? What exactly is the plan here when you scale to the 1,000 patients Musk says he wants by end of 2026? A GoFundMe for everyone?
The Ryan Biggs Question
The fundraiser was organized by someone named Ryan Biggs, who describes himself as Mike’s friend. When I started digging into who Ryan Biggs actually is, things got weirder.
His LinkedIn shows he works in risk management for Marsh McLennan, which happens to be one of the world’s largest insurance brokers, the kind that handles corporate liability for medical device manufacturers. The kind that would have a very professional interest in how experimental brain implant complications get framed and documented. The account had been dormant for six years with no posts, no updates, complete radio silence. Then suddenly, four months ago, three posts about Mike’s GoFundMe appear in quick succession posted to his professional network. Each post got around 10 shares without any comments or likes, which is bizarre engagement for what’s supposedly a personal crisis you’re sharing with colleagues.
Then there’s this gem: “The GoFundMe had less than $300 after a little over a week. Yesterday was absolutely insane and took us to over 19K. However, Neurolink saw the GoFundMe and they are going to make Battlefield 4 compatible with Nuerolink. An absolute miracle and storybook ending.”
I need you to sit with that for a second. “Storybook ending.”
He misspelled Neuralink two different ways in one post, even though he spelled it correctly in the GoFundMe itself. Maybe he genuinely can’t spell, or maybe it’s plausible deniability of the “I don’t even know how to spell their name, how could I possibly be working with them” variety. I searched everywhere for this Battlefield 4 announcement — Neuralink’s blog, press releases, gaming news outlets, YouTube, Reddit, gaming forums where people obsessively track every Neuralink development. Nothing. It doesn’t exist. There’s no announcement, no confirmation, no evidence this game integration was ever planned or promised.
But here’s what really gets me: what exactly is the storybook ending here? That Mike can maybe play a video game someday? Is Mike better? Is he stable? Is he out of crisis? We don’t know. The “ending” isn’t about Mike’s wellbeing or recovery or stability. It’s about a claimed software compatibility that I can’t even verify exists. That’s not how you describe someone’s recovery from suicidal ideation unless the point was never actually Mike’s wellbeing in the first place.
What This Means
I can’t verify Mike was depressed, suicidal, or whether this crisis was caused by the implant or ALS. This is someone else speaking on his behalf through a GoFundMe. I reached out multiple times. Silence.
But here’s what I can verify: In June 2025, Neuralink presented a video of Mike talking about how happy he was, how the implant enabled him to work and feed his children. That same month, someone created a GoFundMe saying Mike was “ready to give up on life” and in complete crisis.
So which is it? Was the video old footage presented as current? Did something change rapidly? Is the crisis even accurate? We can’t know because there’s no systematic tracking, no independent verification. Promotional footage and crisis fundraising existing in the same month with zero explanation is the problem. You can’t present someone as thriving to investors while they’re allegedly asking strangers for rent money — unless we’re never supposed to see both narratives at once.
This pattern should sound familiar. When Neuralink’s animal testing killed at least 15 of 23 monkeys at UC Davis, when veterinary records documented animals scratching at their heads until they drew blood, Musk said the monkeys had preexisting conditions. It wasn’t the chip, it was the animals. The technology was fine.
When companies control every piece of information about patient outcomes, when promotional footage and crisis fundraisers appear in the same month with no independent verification, it becomes impossible to distinguish between patients struggling because of the technology and patients being positioned as the problem. That’s not an accident. That’s a feature.
ALS is devastating on its own. Mike’s crisis could be unrelated to the implant. But if this was a serious adverse event, it needed FDA reporting under 21 CFR 312.32. If a senior executive donated $3,000, that’s exactly the conflict of interest FDA regulations prevent. In experimental brain surgery trials, this opacity is a patient safety crisis.
Which is why I built the registries below.
*Data Current as of November 7, 2025
All patient information, enrollment statistics, clinical trial sites, and technical specifications documented below reflect publicly available information as of November 7, 2025. This registry will be updated regularly as new information becomes available.
Table 1: Neuralink Clinical Trial Sites
About this table: Shows the four confirmed locations where Neuralink is conducting human trials, when they started, and how many patients have been implanted at each site.
Table 2: Patient Registry
About this table: Complete list of all known Neuralink patients based on public information. *P8 and P9 received implants on the same day. Patient 1 experienced 85% thread retraction at one month, resolved via software updates rather than addressing the underlying hardware problem.
Table 3: Enrollment Projections vs. Reality
About this table: Comparison of Neuralink’s projected enrollment from investor documents (2022-2023) versus actual implants from company announcements. *2030 projection represents annual surgeries, not cumulative total.
What The Data Shows
When you look at the numbers systematically, patterns emerge that the company’s selective announcements obscure. Some patients like Noland, Brad, and Audrey have substantial public presence with frequent, detailed updates about their experiences. Others like Alex and RJ have minimal information despite apparently successful surgeries. Four patients have essentially no public information beyond initial announcements, which means we know they exist because Neuralink or a hospital mentioned them once, and then nothing. No updates, no social media, no way to know if they’re thriving or struggling or somewhere in between.
This creates a profoundly skewed picture where we primarily hear about successes and have very limited information about anyone who isn’t actively promoting the technology. That’s not inherently sinister, patients have every right to choose their level of public engagement, but it does mean the public narrative is being shaped almost entirely by the patients who are doing well enough to post regularly and enthusiastically. The ones who aren’t posting could be perfectly fine and just private, or they could be in crisis with no one noticing because there’s no systematic tracking.
The Surveillance Paradox
Neuralink patients are under the most intimate surveillance imaginable — brain activity recorded continuously, transmitted wirelessly, processed by algorithms, stored indefinitely. The company monitors their neural signals in real time with 1,024 electrodes. Yet paradoxically, we have minimal systematic surveillance of patient outcomes and wellbeing. They closely monitor what brains are doing but provide almost no public transparency about how patients are actually doing.
The expansion is concerning. Neuralink grew from 3 patients in 2024 to 13 by November 2025, rapid growth for such high-risk trials, especially given that Patient 1’s hardware failed with 85% thread retraction. They fixed it with software, turning up sensitivity on remaining threads instead of addressing why threads pulled out of brain tissue. Very Elon: why invest in better hardware when you can make the AI work harder?
Who Owns Your Brain Data?
Every time a Neuralink patient thinks about moving a cursor, their brain activity is recorded, transmitted, and stored. The N1 implant’s 1,024 electrodes create a continuous stream of brain data. Who owns it? The patient? Neuralink? The answer will determine what happens when this scales, and it’s disturbingly unclear.
Neuroethicist Marcello Ienca, who co-originated “neurorights” in 2017, puts it bluntly:
“Brain information is probably the most intimate and private of all information.”
Research by Hong Yang and Li Jiang confirms neural data is “uniquely sensitive due to their most intimate nature.” Yet HIPAA was passed in 1996, decades before brain-computer interfaces existed. Current laws don’t protect neural data because nobody imagined continuous wireless brain recording.
Even BCI researchers don’t think regulations work. A 2020 survey by Stephanie Naufel and Eran Klein found researchers felt current laws were inadequate to protect neural data privacy. Neuralink’s consent forms aren’t public. Based on standard practices, Neuralink likely retains ownership, patients may have limited access to their own brain data, and there may be no deletion mechanism.
This matters because Neuralink exists within Musk’s ecosystem: Tesla collecting driving data, X with behavioral archives, xAI training on everything. The company recording your thoughts is owned by the same person who owns your social platform, AI company, and self-driving cars.
Why This Matters More Than Ever
Marcello Ienca has been particularly vocal about Neuralink specifically, which is notable because he generally supports BCI research and believes the technology has enormous therapeutic potential.
“It’s the only company that has clearly stated it wants to implant brain chips in millions of people for nonmedical purposes — that is, solely to improve their performance,”
he said in a 2025 interview. His concern isn’t about the medical applications, which he strongly supports and sees as genuinely life-changing for people with paralysis or neurological conditions. His concern is about what happens when brain data collection scales beyond therapeutic use into the consumer market where the incentives are completely different.
“We live in a world where our brain is our most important asset,” Ienca explains. “It underpins the data-driven business models of social media operators and online retailers. These companies want to know all about our psychological preferences so that they can influence our purchasing decisions, exploit our vulnerabilities and keep us captive.”
He’s describing the business model that already exists for your clicks and likes and browsing history, the infrastructure that’s already built to monetize your attention and manipulate your behavior. Now imagine that same business model applied to direct access to your brain activity. Not inferring what you’re thinking from what you click, but reading what you’re thinking directly from neural signals.
This is why the question of who owns neural data isn’t just about thirteen patients in an experimental trial making medical decisions under desperate circumstances. It’s about the infrastructure being built right now that will determine how this technology scales, who profits from it, and who gets protected when it does. And when you start looking at who’s actually funding Neuralink and what they’ve built before, every warning about data ownership and privacy starts to feel almost naive.
What Comes Next
These patients deserve support that doesn’t rely on GoFundMe campaigns. They deserve transparent reporting and regulatory oversight that isn’t being gutted. They deserve rights to their own neural data.
When you pull Neuralink’s investor records, you find people who’ve spent decades building surveillance infrastructure and monetizing human behavior. The same people who turned social media into hundreds of billions are now funding technology that records your thoughts directly.
When I traced their money and what they built before investing in brain-computer interfaces, I realized they weren’t waiting for this technology. They were building the infrastructure it would need years before the hardware existed, positioning themselves at every chokepoint where neural data would flow.
And when I looked at where that money actually comes from — venture capital firms with deep ties to UAE sovereign wealth, defense contractors embedded in the Department of Defense, the same networks that fund both surveillance startups and military AI — the question of who owns your brain data starts to answer itself in ways that should terrify you.
Part 5 is where we follow the money from Silicon Valley to Abu Dhabi to the Pentagon and realize your brain data was always going to be a national security asset.
Sources Cited
Clinical Trial Information
ClinicalTrials.gov - Neuralink PRIME study registry: https://clinicaltrials.gov/
ElonX.net, “Neuralink Statistics”: https://www.elonx.net/neuralink-statistics/#google_vignette
Ryan Biggs LinkedIn: linkedin.com/in/ryan-biggs-7b173963/?skipRedirect=true
Neuralink June 2025 Summer Update: https://www.youtube.com/watch?v=FASMejN_5gs&t=1022s
Barrow Neurological Institute: https://www.barrowneuro.org/
University of Miami Health: https://umiamihealth.org/
University Health Network (Toronto Western Hospital): https://www.uhn.ca/
University College London Hospitals NHS Foundation Trust: https://www.uclh.nhs.uk/
Patient Information
You can find a Neuralink user counter at https://www.howmanyhumanshaveneuralink.com/
Neuralink official blog: https://neuralink.com/blog/
Neuralink official x account: https://x.com/neuralink
Mike Melgarejo Case
GoFundMe campaign for Mike Melgarejo (June 2025): https://www.gofundme.com/f/those-things-we-do-so-others-may-live
Regulatory & FDA Information
FDA regulations on adverse event reporting: 21 CFR 312.32: https://www.ecfr.gov/current/title-21/chapter-I/subchapter-D/part-312/subpart-B/section-312.32
FDA guidance on financial disclosure by clinical investigators: 21 CFR Part 54: https://www.ecfr.gov/current/title-21/chapter-I/subchapter-A/part-54
Academic Sources: Neural Data Privacy & Neurorights
Marcello Ienca (primary scholar on neurorights):
Marcello Ienca & Roberto Andorno, “Towards New Human Rights in the Age of Neuroscience and Neurotechnology,” Life Sciences, Society and Policy, 13:5 (2017): https://link.springer.com/article/10.1186/s40504-017-0050-1
Marcello Ienca, “On Neurorights,” Frontiers in Human Neuroscience (September 24, 2021): https://pubmed.ncbi.nlm.nih.gov/34630057/
Hong Yang & Li Jiang:
Hong Yang & Li Jiang, “Regulating neural data processing in the age of BCIs: Ethical concerns and legal approaches,” Digital Health, 11 (2025): https://journals.sagepub.com/doi/full/10.1177/20552076251326123
Stephanie Naufel & Eran Klein:
Stephanie Naufel & Eran Klein, “Brain-Computer Interface (BCI) Researcher Perspectives on Neural Data Ownership and Privacy,” Journal of Neural Engineering, 17(1):016039 (January 28, 2020): https://pubmed.ncbi.nlm.nih.gov/31766026/
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