The charity has distributed $6.1 million in research grants to combat progressive vision loss from inherited retinal conditions. A major allocation of $5.1 million is funding Axovia Therapeutics' experimental gene therapy, AXV-101, to cover manufacturing and safety development through January 2026. Additionally, the nonprofit committed $1 million toward research that addresses multiple retinal disorders. The effort originally gained momentum by using a high-value adventure van to build an ongoing public sweepstakes fundraising model.
Key points
The nonprofit has successfully distributed 6.1 million dollars to accelerate research tar…: The nonprofit has successfully distributed 6.1 million dollars to accelerate research targeting inherited retinal diseases.
Targeted funding for AXV-101 aims to push the experimental therapy for Bardet-Biedl syndr…: Targeted funding for AXV-101 aims to push the experimental therapy for Bardet-Biedl syndrome type 1 into clinical trials.
An additional 1 million dollars is committed to developing treatments for multiple types…: An additional 1 million dollars is committed to developing treatments for multiple types of inherited retinal conditions.
Sources checked by our analysis pipeline: 1
An Arizona couple turned a devastating diagnosis for their son into an unusual fundraising effort, donating a custom adventure van to launch a charity that says it has now paid out $6.1 million in research grants for inherited retinal diseases. According to A Race Against Blindness, founded by physician Stephen Johnston and his wife, nurse Kristina Johnston, the organisation grew out of their son Luke’s 2020 diagnosis with Bardet-Biedl syndrome, a rare genetic condition that can cause progressive vision loss. Its latest funding milestone includes $5.1 million committed to an experimental gene-therapy programme and $1 million for research into treatments that could benefit people with multiple inherited retinal conditions.
The charity, which is registered as a US 501(c)(3) public organisation and is based in Gilbert, Arizona, says its aim is to accelerate research into diseases that can cause children to lose their sight. Its financial and grant history is available through its website, while its nonprofit registration and tax filings can be checked through ProPublica’s Nonprofit Explorer.
Regulatory interventions in India are struggling to maintain long-term price relief for oncology treatments as pharmaceutical supply chains continually inflate profit margins. Healthcare advocates emphasize that one-time maximum retail price caps fail over time because mark-ups on distributor purchase prices steadily rebound without continuous oversight. Consequently, families facing critical medical conditions remain vulnerable to recurring, excessive out-of-pocket healthcare expenses.
A distant relative carried out a violent classroom assault on a student at Raptadu's Zilla Parishad High School after she rebuffed his persistent harassment and threatened to tell her parents. The incident left another student injured as she tried to defend her peer, prompting state authorities to intervene and demand strict accountability. Police in Anantapur district have launched an intensive manhunt to apprehend the fugitive assailant.
The Bone Marrow Donor Programme has accelerated life-saving procedures across Singapore to meet rising clinical demand for blood disease treatments. Despite this momentum, high dropout rates and matching hurdles mean that four out of five annual hospital requests still fail to reach the transplant stage. Greater corporate collaboration is now helping bridge this gap by offering workplace leave for registered individuals called to donate.