Grant History

The $5.1M of total grant support we've given to funding research is made possible by the generosity of our sponsors and donors. Real people making an impact on saving children's eyesight.

Grant Amount

$3M
2024
$2.1M

2025

Year
Grant Amount
Month
Amount/ month
Purpose

2026

$1.1M

January
$1.1M

To close the remaining funding gap required to launch the AXV-101 clinical trial, enabling the study to begin in early 2026.

2025

$1M

September
$1M

To support clinical development of the first-in-human trial, including trial preparation and regulatory progress following clinical trial clearance.

2024

$3M

October
$1M
December
$2M

To fund the preclinical development and regulatory preparation of AXV-101, a gene therapy for Bardet-Biedl Syndrome type 1 (BBS1), advancing the program toward its first human clinical trial.

News and Articles

Recent News
January 06, 2026
A Race Against Blindness Awards Additional $1.1 Million Grant to Ensure Advancement of AXV-101 into Clinical Trial for Bardet-Biedl Syndrome 1 (BBS1)

Newly added funding closes critical gap and enables planned trial initiation in early 2026

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A Race Against Blindness Awards Additional $1.1 Million Grant to Ensure Advancement of AXV-101 into Clinical Trial for Bardet-Biedl Syndrome 1 (BBS1)

Latest Posts

About BBS December 24, 2025
BBS1 Gene Therapy Clinical Trial Receives MHRA Approval: A Major Milestone for the BBS Community
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March 25, 2025
Comprehensive U.S. Directory of Pediatric Retinal Disease Centers

This directory highlights premier institutions across the United States with specialized programs for diagnosing and managing pediatric inherited retinal diseases (IRDs) such as retinitis pigmentosa, Stargardt disease, Leber congenital amaurosis, and Bardet-Biedl Syndrome. Each listing includes the center’s website and contact information.

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March 25, 2025
Pediatric Inherited Retinal Disease Specialists Across the United States
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March 25, 2025
Global Experts Advancing Bardet-Biedl Syndrome Research
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March 25, 2025
Living with Bardet-Biedl Syndrome
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