Saving Eliza

Saving Eliza is the name for both a campaign, and associated three minute video, focused on saving the life of Eliza O'Neill. Eliza, then a 3-year-old living in Columbia, South Carolina, was diagnosed in 2013 with Sanfillipo syndrome – a terminal, rapidly degenerative disease in children.[1] The O'Neill family is working to raise the money needed to fund a clinical trial which could save the lives of Eliza and other children with the disease. Their efforts are part of a trend, by concerned private citizens, to raise money for research and drug trials regarding rare diseases, which might otherwise be under-addressed by pharmaceutical companies.[2] The O'Neills had found that researchers at Nationwide Children's Hospital, in Columbus, Ohio, had found a gene therapy that worked on mice, but they would need an additional $2.5 million to start clinical trials humans.[3]

The O'Neills established the non-profit Cure Sanfilippo Foundation to advocate for and fund research towards the cure for children.[4][5] The campaign was launched in October 2013.[6] After raising only $250,000 in the first half year, they expanded their efforts with the addition of the video in July 2014.[2][7]

The original Saving Eliza campaign was channeled through the GoFundMe web platform in October 2013.[6] By 2016, after the video went viral, the GoFundMe campaign surpassed its original goal of $2 million – a new record, at that time, as the most money ever raised for a single GoFundMe campaign.[8]

References
  1. Flam, Lisa (2014-06-17). "'Saving Eliza' campaign edges closer to goal for medical trial". TODAY. NBC News. Retrieved 2018-04-16.
  2. Johnson, Linda A. (2015-03-25). "Science, industry economics, patients are boosting research on rare disease drugs _ and hope". U.S. News & World Report. Associated Press. Retrieved 2018-04-16.
  3. Carroll, Linda (2014-04-21). "#SavingEliza: Parents use viral video to try to save their 4-year-old's life". TODAY. NBC News. Retrieved 2018-04-16.
  4. "Homepage". Cure Sanfilippo Foundation. Retrieved 2018-04-16.
  5. Carstensen, Melinda (2014-11-07). "'Saving Eliza': Family raising money for Sanfilippo Syndrome drug $530K away from goal". Fox News. Retrieved 2018-04-16.
  6. "Saving Eliza". GoFundMe. 2013-10-02. Retrieved 2018-04-16.
  7. "Saving Eliza". YouTube. 2014-07-06. Retrieved 2018-04-16.
  8. Carroll, Linda (2016-10-14). "A birthday wish: 'Saving Eliza' gets final push for medical trial". TODAY. NBC News. Retrieved 2018-04-16.
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