Non-profit funding sight-saving research for children
Stories of Hope
Follow A Race Against Blindness research funding, inherited retinal disease developments, community stories, grant announcements, and updates from families racing toward sight-saving treatments.
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University College London named Dr. Victor Hernandez, co-founder of Axovia Therapeutics, to its 200 Faces. In thanking the people behind his gene therapy for Bardet-Biedl syndrome, he singled out A Race Against Blindness.
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Every dollar below has been paid out to research, made possible by the generosity of our sponsors and donors. Real people making an impact on saving children's eyesight.
total research funding, fully paid out · as of October 2026
$3M awarded
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.
$1M awarded
To support clinical development of the first-in-human trial, including trial preparation and regulatory progress following clinical trial clearance.
$2.1M awarded
To close the remaining funding gap required to launch the AXV-101 clinical trial, enabling the study to begin in early 2026; and, through a grant to the Foundation Fighting Blindness, to fund early-stage gene therapy research with Dr. Thomas Mendel and gene-agnostic therapy (NACA) aimed at slowing vision loss in RP. A matched donor brought in an additional $775,000, bringing the total impact of that grant round to $1.55M.
A Race Against Blindness has committed $1 million toward inherited retinal disease research through a partnership with the Foundation Fighting Blindness and the RD Fund. With matching funds, the total impact of this commitment will reach $1.55 million, helping advance promising therapies for families affected by vision loss.
Read moreNewly added funding closes critical gap and enables planned trial initiation in early 2026
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