{
  "id": 17355957,
  "title": "Arizona parents turn donated van into charity fighting inherited blindness",
  "url": "https://urgent.news/2026/10/31/arizona-parents-turn-donated-van-into-charity-fighting-inherited",
  "topic": "culture",
  "section": "Culture",
  "published": "2026-10-31T06:30:00.000Z",
  "source": {
    "name": "Times of India",
    "slug": "times-of-india",
    "url": "https://timesofindia.indiatimes.com/world/us/arizona-parents-donated-an-adventure-van-to-launch-a-charity-inspired-by-their-sons-rare-disease-the-organisation-now-reports-6-1-million-in-research-grants-to-help-tackle-inherited-blindness/articleshow/135390372.cms"
  },
  "original_language": "en",
  "account": "Stephen and Kristina Johnston, a physician and nurse from Gilbert, Arizona, turned a life-changing diagnosis for their son into a fundraising initiative. Their son Luke was diagnosed with Bardet-Biedl syndrome (BBS) in 2020, a rare genetic condition that can lead to progressive vision loss. The condition affects multiple body systems and can cause retinal degeneration, obesity, kidney abnormalities, and other complications. The Johnstons were unfamiliar with the condition and eager to find ways to support research and raise awareness.\n\nIn 2020, Stephen Johnston purchased a custom-built adventure van, valued at approximately $250,000, and donated it as the grand prize in the charity's inaugural sweepstakes. The idea behind the sweepstakes was to attract a wider audience than traditional fundraising events, reaching people who might not typically encounter information about Bardet-Biedl syndrome or inherited blindness. The charity, A Race Against Blindness, has now paid out a total of $6.1 million in research grants.",
  "summary": "After their son Luke was diagnosed with Bardet-Biedl syndrome, an Arizona couple established A Race Against Blindness. The charity has since raised over $6.1 million for research into inherited retinal diseases. They also organized a sweepstakes featuring a custom adventure van, significantly increasing awareness. Their contributions support groundbreaking gene therapy aimed at BBS1, and funding…",
  "key_points": [],
  "editors_take": null,
  "illustration": null,
  "coverage": {
    "outlets": 1,
    "also_reported_by": []
  },
  "ai_generated": true,
  "disclaimer": "Summaries, key points and the editor’s take are written by software from other outlets’ reporting and may contain errors — always check the linked original."
}