This video, “Saving Eliza,” tells one family’s story, which represents what all children and families face when diagnosed with Sanfilippo Syndrome.
About “Saving Eliza”
On the morning of April 2, 2014, the three-minute video “Saving Eliza” was released (SavingEliza.com). It was made for free by the eccentric videographer Ben Von Wong, who answered the O’Neills’ request for help and volunteered his time. The video tells the story of an adorable little 4-year-old girl, Eliza O’Neill, and her family’s hope to help fund a clinical trial that might save her life from the deadly disease called Sanfilippo Syndrome.
Something amazing happened. People were moved by the O’Neill’s story and they took action. These are some highlights of how one video inspired people around the world to make such a huge difference:
- Saving Eliza video raised $500,000 in the first 15 days after release. Every dollar funding research for Cure Sanfilippo Foundation (a 501(c)3 nonprofit started by Eliza’s parents Glenn & Cara O’Neill) in the effort to help ALL children with the disease.
- In summer 2014, Saving Eliza becomes the first GoFundMe campaign EVER to reach the $1 million-raised mark.
- In late 2014, Saving Eliza becomes the first GoFundMe campaign EVER to reach the $2 million-raised mark.
- In May 2014, the O’Neills began what became a 726-day quarantine, self-isolating themselves from all outside people to protect Eliza from a virus that could disqualify her from consideration for the gene therapy clinical trial described in Saving Eliza.
- In early 2015 through today, families of other children with Sanfilippo join Cure Sanfilippo Foundation as partner-families for support, advocacy power, and fundraising horsepower. Meet the partner-families that are the heart of the Foundation.
- In May 2016, Eliza became the first patient with Sanfilippo ever treated with an intravenous gene gherapy in a clinical trial, and the O’Neill family ended their isolation. At least 15 children have since been treated with the same treatment in this dose escalation gene therapy clinical trial that Cure Sanfilippo Foundation helped fund, thanks to the funds raised from Saving Eliza.
- Cure Sanfilipppo Foundation continues fundraising and funding research grants and clinical trials. See a complete list of the Foundation’s grants and projects.
It started as a shot-in-the-dark idea in early 2014: a viral video. All to spread awareness about the worst disease no one had ever heard of. Years later, it has turned into the largest national non-profit for Sanfilippo Syndrome, Cure Sanfilippo Foundation. The Foundation supports research for treatments and clinical trials now treating children. All in the hopes of a proven and available treatment and, one day, a cure.