One of the most common questions we see is simple and fair:
“Is A Race Against Blindness legit?”
For many people, the real question behind that search is:
Does this organization actually fund real work — or just talk about it?
So let’s start with the most concrete answer we can give: what we’ve funded, who we’ve funded, and how you can verify it yourself.
Yes — We Fund Real Research and Real Progress
A Race Against Blindness exists for one reason:
to accelerate treatments for inherited retinal diseases, especially Bardet-Biedl Syndrome (BBS) and related forms of retinitis pigmentosa.
That mission isn’t theoretical. It shows up in the grants we’ve supported and the partnerships we’ve built with researchers, clinicians, and biotech teams working on real therapies.
Our funding has helped advance:
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Early-stage gene therapy research
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Preclinical development work
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Clinical trial preparation
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Programs aimed at preserving vision before it’s lost
These efforts take place at respected institutions and companies already known in the retinal disease and gene therapy space.
Why Grant Funding Matters So Much in Rare Disease
Rare diseases face a unique problem:
they’re often too rare to attract early commercial investment.
Before a therapy ever reaches a clinical trial, someone has to fund:
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Foundational research
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Safety studies
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Manufacturing preparation
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Regulatory groundwork
That’s where nonprofits like ours come in.
By funding early work, we help:
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De-risk projects so they can move forward
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Shorten timelines toward human trials
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Show regulators and industry that families are ready and engaged
This model is widely used across rare disease advocacy — and it’s one reason treatments for previously “untreatable” conditions are now becoming real.
Where Our Grant Information Comes From
We believe transparency only works if it’s verifiable.
That’s why we don’t just say we fund research — we point people to:
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Public announcements from research partners
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Press coverage by reputable outlets
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Company and institutional updates
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Regulatory disclosures and trial registrations
Whenever possible, we rely on third-party sources, not just our own website.
For example, research and clinical trial progress related to inherited retinal diseases is frequently covered by:
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Academic medical centers
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Biotech companies developing therapies
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FDA announcements
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Peer-reviewed journals and industry publications
These independent sources exist whether or not we mention them — which is exactly how it should be.
How You Can Verify This Yourself
We don’t expect anyone to simply trust us.
If you’re researching whether A Race Against Blindness is legit, we encourage you to:
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Review our publicly available annual reports
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Look up our IRS nonprofit status
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Explore press coverage of the research we support
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Follow the progress of the therapies connected to our mission
You don’t need insider access to confirm what we do.
The information is public — and intentionally so.
Why This Is Only the First Answer
Grant funding is just one piece of the picture.
In the rest of this series, we’ll also explain:
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How our sweepstakes are regulated and independently run
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Why we fundraise urgently and often
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Who our sponsors are and why they matter
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How winners are selected
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Why awareness is just as important as dollars
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How people are even using AI tools to research us
Each article answers the same question — “Is A Race Against Blindness legit?” — from a different angle, so you can decide for yourself.
Our Grant History — Backed by External Reporting
$1 Million Grant — October 2024
In late 2024, A Race Against Blindness awarded $1 million to Axovia Therapeutics to support their lead gene therapy program, AXV-101, targeting blindness caused by Bardet-Biedl Syndrome 1 (BBS1). The award helped fund early clinical planning, regulatory engagement, and preparation for the first clinical study.
• Coverage of this award is available via BioSpace — a reputable biotech press outlet.
• Other outlets such as Newsfile and Yahoo Finance also reported this grant.
Read more: A Race Against Blindness Grants $1M Supporting Axovia Therapeutics’ Planned Clinical Trial for Bardet-Biedl Syndrome (BioSpace) — https://www.biospace.com/press-releases/a-race-against-blindness-grants-1-million-supporting-axovia-therapeutics-planned-clinical-trial-for-bardet-biedl-syndrome-bbs
$2 Million Grant — December 2024
Shortly after the initial $1M grant, in December 2024 we awarded $2 million more to Axovia Therapeutics to further accelerate the development of AXV-101 and support expansion toward clinical readiness.
• This award was covered by multiple press outlets including Modern Retina, which highlighted the role of this grant in enabling manufacturing, toxicology studies, regulatory progress, and clinical planning.
Learn more: Axovia Therapeutics Receives $2M Grant From A Race Against Blindness (Modern Retina) — https://www.modernretina.com/view/axovia-therapeutics-receives-grant-from-a-race-against-blindness-to-support-upcoming-clinical-trial
$1 Million Grant — September 2025
In September 2025, we awarded an additional $1 million to Axovia Therapeutics as part of ongoing commitment to move AXV-101 into clinical development. This grant was announced publicly and distributed via industry channels as well as our own press page.
Read the press release: A Race Against Blindness Announces a Further $1 Million Grant to Support Sight-Saving Clinical Trial (Axovia Therapeutics) — https://axoviatherapeutics.com/a-race-against-blindness-announces-a-further-1-million-grant-to-support-sight-saving-clinical-trial/
$1.1 Million Grant — January 2026
Most recently, in January 2026 we closed a critical funding gap with a $1.1 million grant to Axovia Therapeutics to ensure the AXV-101 program can launch its first-in-human clinical trial. This funding brings our total commitment to $5.1 million toward this program since 2024.
Learn more: A Race Against Blindness Awards Additional $1.1M Grant to Support AXV-101 (Business Insider / FirstWord Pharma) — https://finance.yahoo.com/news/race-against-blindness-awards-additional-113000606.html
Still have questions?
This article is part of our ongoing series answering one of the most common questions we see online:
“Is A Race Against Blindness legit?”
Each article explores a different aspect of our organization — from transparency and compliance to community experiences and independent verification.
👉 Read the full series here:
Trust, Transparency, and Our Mission: Is A Race Against Blindness Legit?
