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

March 13, 2024
Bardet-Biedl Syndrome

Bardet-Biedl Syndrome (BBS) is a rare genetic disorder that affects multiple body systems, causing vision problems, obesity, kidney issues, extra fingers or toes, and intellectual disabilities. It is inherited in an autosomal recessive pattern and affects about 1 in 100,000 to 160,000 people worldwide. Diagnosis involves clinical evaluation and genetic testing. Current research focuses on understanding its genetic causes, studying cilia function, and developing treatments to manage its symptoms.

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March 13, 2024
Diagnostic Process for Bardet-Biedl Syndrome

Bardet-Biedl Syndrome (BBS) manifests through a combination of symptoms, which can vary in severity among affected individuals. Common symptoms include vision problems (retinal degeneration leading to blindness), obesity, polydactyly (extra fingers or toes), kidney abnormalities, intellectual disabilities, and reproductive issues.

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