Every Research Grant A Race Against Blindness Has Funded: $6.1 Million, Dated and Documented
Stories of Hope
As of October 2026, A Race Against Blindness has paid out $6.1 million in research grants: $5.1 million to Axovia Therapeutics for AXV-101, the first gene therapy to reach a clinical trial for Bardet-Biedl syndrome, and $1 million for gene-agnostic therapies that could treat many inherited retinal diseases at once, through Foundation Fighting Blindness and the RD Fund. Every grant is paid, not pledged, and every one is listed below with its date, its recipient and what it bought.
The grant record
| Date | Amount | Recipient | What it funded |
|---|---|---|---|
| Jun 2026 | $1,000,000 | Foundation Fighting Blindness / RD Fund | Gene-agnostic therapies: $775,000 to the RD Fund for neuroprotective, antioxidant and optogenetic programs, matched dollar for dollar by the Gordon and Llura Gund Foundation Challenge to $1.55 million; $225,000 to Dr. Thomas Mendel at The Ohio State University Wexner Medical Center, completing a five-year $375,000 Career Development Award on delivering gene therapy to the retinal surface |
| Dec 2025 | $1,100,000 | Axovia Therapeutics | Closed the final funding gap for the AXV-101 clinical trial, which had regulatory clearance but could not start without it (announced January 2026) |
| Sep 2025 | $1,000,000 | Axovia Therapeutics | The work required to obtain clinical trial authorization for AXV-101 |
| Dec 2024 | $2,000,000 | Axovia Therapeutics | Manufacturing and safety studies for AXV-101 |
| Oct 2024 | $1,000,000 | Axovia Therapeutics | The first grant toward the AXV-101 clinical trial |
Total: $6.1 million in research grants. Separately, in May 2026 we gave $60,000 in community support to the Bardet-Biedl Syndrome annual conference: patient travel expenses, and full media coverage of every session so families anywhere in the world can access the education. The grant history page carries the same list, and the Form 990 on ProPublica shows grants paid by year.
What is AXV-101, and why did it get $5.1 million?
AXV-101 is an investigational gene therapy for retinal degeneration caused by mutations in the BBS1 gene, the most common form of Bardet-Biedl syndrome and the one our son has. It is developed by Axovia Therapeutics, a UK company co-founded by Professor Phil Beales, who has studied BBS for decades. The therapy delivers a working copy of the gene to the retina in a single injection into one eye.
We funded it in four installments because that is how a therapy gets to patients: first the science, then manufacturing and safety work, then the regulatory package, then the trial itself. In the third quarter of 2025 the trial received clinical trial clearance, and in December 2025 the UK regulator, the MHRA, approved it; it is registered on ClinicalTrials.gov as NCT07269665, "First-in-Human, Dose Escalation Trial of AXV-101 in BBS1-Related Retinal Degeneration (AXIS)," an open-label early-phase trial of up to 12 children aged 4 to 17 with a primary objective of safety. It still could not start, because a funding gap remained. Our December 2025 grant, announced in January 2026, closed it. As Professor Beales put it at the time, the funding was "a crucial milestone in bringing this investigational therapy into the clinic in the coming months."
A Race Against Blindness is not a sponsor or operator of the trial, and holds no stake in Axovia; we are a grant funder. Axovia runs the trial; we paid for the chance for it to exist. Promising therapies should not stall at the threshold of human trials for lack of funding, and this one did not.
Why fund gene-agnostic research too?
Because BBS is one of more than fifty inherited retinal diseases, caused by mutations in more than a hundred genes, and a gene-specific therapy helps only the families with that gene. Gene-agnostic approaches, which aim to keep retinal cells alive regardless of which gene is broken, could reach all of them. In June 2026 we paid $1 million to that work through Foundation Fighting Blindness and its RD Fund, the largest funder of inherited retinal disease research in the world, and the Gund Foundation matched the RD Fund portion to bring the total to $1.55 million. Part of the grant completes a career development award for Dr. Thomas Mendel at Ohio State, whose preclinical work tests delivering gene therapy onto the surface of the retina rather than beneath it.
How are grants decided now?
Until 2026, grants were decided by our board, case by case, around one therapy we understood deeply. In August 2026 we opened a Research Grants Program with published funding priorities and eight published evaluation criteria, a two-stage process beginning with a letter of inquiry, rolling deadlines, and review by our Grant Committee with outside scientific advisors where appropriate. Any qualified research organization, in the United States or abroad, can apply. The next grant will be decided by the fundraisers running now.
Frequently asked questions
How much research has A Race Against Blindness funded?
$6.1 million in grants as of October 2026, all fully paid out.
What has A Race Against Blindness funded?
$5.1 million to Axovia Therapeutics for the AXV-101 gene-therapy clinical trial for BBS1-related retinal degeneration; $1 million for gene-agnostic therapies through Foundation Fighting Blindness and the RD Fund, matched to $1.55 million. Separately, $60,000 in community support funded the 2026 Bardet-Biedl Syndrome conference.
Has the gene therapy A Race Against Blindness funded reached patients?
The AXV-101 trial was approved by the UK's MHRA in December 2025 and is registered as NCT07269665. It is a first-in-human safety trial of up to 12 children.
Is the money paid or promised?
Paid. Every grant listed has been transferred to its recipient.
How can a researcher apply for a grant?
Through the Research Grants Program at araceagainstblindness.org/grants, starting with a letter of inquiry. There are no deadlines.
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