July 2025 Updates from the Lab

July 2025 Updates from the Lab

Today, we're announcing two major updates as part of our ongoing mission to accelerate a cure for Long COVID.

TLDR:

• Patient Grant Fund: Fulfilling our initial promise to accelerate patient access to Pemgarda.
• Regulatory Constraints: A deeper overview of the FDA requirements that informed our shift to this faster, compliant strategy.
• Real-World Evidence Platform: A decentralized, community-driven approach that lets patients share treatment data anonymously, helping us rapidly generate insights and prioritize promising therapies while remaining compliant.

1. Announcing a $100,000 Grant Fund: Finishing What We Started

We’re excited to announce the launch of a $100,000 patient grant fund to improve patient access to promising Long COVID treatments like Pemgarda. We’ve heard the community loud and clear, and we recognize that helping patients access treatments is central to our mission.

This fund represents a compliant path forward, offsetting the financial burden for patients whose physicians have already independently determined that treatments are clinically appropriate under EUA criteria.

Clinicians will maintain complete autonomy over all treatment decisions, including independently determining patient eligibility and clinical appropriateness for treatments before applying for grant support. Our role is solely to provide financial assistance based on documented patient need, without influencing or directing medical decisions.

This initial grant fund marks the first step in our renewed commitment, with more planned for the future as we continue to support patient access and expand the evidence base.

Physicians will be able to apply for grants on behalf of eligible patients, and we will be publishing an official application process on or around July 15th 2025.

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Why we’re making this shift

The overhead to running formal clinical studies on monoclonal antibodies like Pemgarda is very high. These drugs exist only under Emergency Use Authorization (EUA), which is a special FDA status that restricts who can receive the drug, how it’s administered, and how it’s studied. 

To formally study these drugs, researchers must obtain approval from an Institutional Review Board (IRB), adding 8+ weeks of delay and significant costs. If the study involves any changes to the drug’s approved use (like dosage or patient group), researchers must file an Investigational New Drug (IND) application, adding 6-12 months of delays and potentially $50,000-100,000+ in costs.

These requirements, while essential for patient safety and ethical oversight, dramatically slow down how quickly the patient community is able to learn from new approaches.

However, what we've learned through our community is that there are already many patients running these experiments in private with their independent physicians. We’ve spoken with patients who have traveled internationally to access novel treatments like Pemgarda and Sipavibart, with some experiencing significant benefit. In many cases, the forward-thinking physicians prescribing these treatments are too busy with the demands of full-time patient care to publish their findings. Without a scientifically robust platform to capture this data, these valuable insights remain invisible to the broader community.

Last week, we spoke with a Long COVID physician who is seeing dramatic improvements in patients taking a microdose of a GLP-1 agonist, significantly reducing their symptoms and increasing quality of life. This is just another example of the many promising experiments quietly happening in private clinics between patients and physicians—insights we believe should be openly shared as a public resource, enabling everyone to clearly see what’s being tried, what’s working, and for whom.

This realization led us to uncover an opportunity to build a decentralized system to structure this data, again using advanced modeling to identify signals within the noise. This strengthens our approach, allowing us to identify effective therapies first and ensuring only the most promising ones undergo lengthy studies.

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2. Launching Development on our Open-Source Treatment Registry

Building upon this insight, we’re developing a decentralized Open-Source Treatment Registry to capture and analyze patient self-experimentation data. 

We will provide the patient infrastructure—such as wearables, standardized assessments, and biomarker assays—making it easy to capture the maximum number of meaningful variables in a patient’s life. Patients will be compensated for each piece of data they contribute. This mutually beneficial structure ensures that incentives are aligned, driving high-quality comprehensive insights for the whole community.

This approach lets us rapidly analyze and share observational data without the delays of traditional clinical trials. Patients are already independently experimenting—effectively conducting decentralized studies in partnership with their physicians. In the modern era of decentralization, our goal is simply to amplify and accelerate these existing efforts by creating a compliant, structured way for everyone to contribute their valuable insights. This strategy helps us rapidly maintain momentum, quickly filter signal from noise and generate actionable evidence.

In the longer term, we remain fully committed to conducting rigorous formal studies to build a robust scientific evidence base. Our current patient-driven approach isn’t stepping away from formal studies; rather, it’s a necessary first step. By openly sharing observational data with the community, we accelerate collective learning—patients don’t have to wait months or years for study results to start benefiting. At the same time, this growing observational evidence base strengthens our position, helping us gain credibility and form essential partnerships with drug companies, patent holders, and researchers. With strong partnerships, studies become more affordable and focused, ultimately delivering faster, clearer, and more impactful outcomes for everyone in the community.

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Thank you for your continued support. We strongly encourage our community to join our Discord, participate actively in conversations, and help us shape the future of Long COVID research together.

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