In order to save his 4-year-old daughter Eliza, Glenn O'Neill needed to raise $2 Million in less than a year to help fund the medical trial that could finally cure the terminal genetic disease known as Sanfilippo Syndrome. He decided that a viral video was the answer, but knew he wasn't up to the task of creating it himself, so he reached out to a group of strangers on the Internet and asked for help. Touched by his plea, world-class photographer Benjamin Von Wong came to the family's aid, and together they created a video that would raise $1.8M in half a year, fund the essential needs for the clinical trial Eliza's life hangs upon, and give hope to the thousands of parents each year who are handed a death sentence called "Sanfilippo" from their pediatrician.
A disease no one has ever heard of. Glenn O'Neill faced a seemingly insurmountable challenge when his daughter Eliza was diagnosed with Sanfilippo Syndrome in late July of 2013. It was a rapidly degenerative and terminal illness, he was told, with no cure and no hope. Eliza would be lucky to survive into her teens. But Glenn and his wife Cara refused to give up hope.
Without a single minute of fundraising or social media between them, they formed the non-profit Cure Sanfilippo Foundation and set out to save their daughter's life. Soon after, they found what they were hoping for: research on a cure so incredible, so promising, that they were close to a clinical trial for children... they just needed $2M in funding.
The number seemed unimaginable to a normal couple, but there was no question they were going to do whatever it took to secure these funds. But after 6 months of traditional fundraising and awareness (parties, golf outings, 5k runs), they had raised only $200K. They just weren't reaching enough people. So in February of 2014, out of time and desperate for a solution, Glenn Googled "How to make a Viral Video."
That search led him to an article by viral video consultant Karen Cheng; Karen, touched by Glenn's desperate email, reached out to photo blog editor DL Cade; who, in turn, sent out an email to hundreds of videographers asking them to help this family. Within minutes he had his response when world-class photographer and artist Benjamin Von Wong, on a project in Malaysia at the time, sent back a definitive "Yes."
This is how, in the last week of March, the O'Neills found themselves hosting Ben and two others for 8 days, as they captured over 40 hours of video, editing it along the way.
Ben, who took on the project completely free of charge, left on March 28th. On April 2nd, the 3-minute video called "Saving Eliza" went live on the O'Neill's GoFundMe campaign, explaining the urgent cause of parents fighting Sanfilippo Syndrome better than any words written or spoken had before. Local news media and viral TV website Right This Minute broke the story on the video release. The O'Neill's bought the URL for SavingEliza, and had that directly point to the video at the GoFundMe page, for ease for donor. The video was so compelling, it allowed the O'Neill's to craft their Foundation social media marketing message simply as "Please Watch & Share SavingEliza.com".
The video has since been viewed over 450,000 times. Viral? No. But the impact it had is undeniable.
Within 15 days of launch, the video had raised $500,000 for the O'Neill's GoFundMe. In all, the video catapulted the O'Neill's campaign from $40,000 and 500 donors on April 1, to over $1.8 Million, with 49,000 shares, and over 30,000 unique donors from 70 countries by December 2014, breaking GoFundMe records by over $1M. Two update videos followed, one of Eliza's big brother, and another of how the video came to be. Both picked up more media attention, pointing the viewer directly back to Saving Eliza. Additional offline donations attributed to the video put the total raised over $2M and, in December, the O'Neills achieved the needed research funding goals that seemed so impossible just months before. All done pro-bono and no advertising dollars spent.
All funding went directly to the O'Neill's 501c3 non-profit Cure Sanfilippo Foundation, with no paid employees and no personal expenses for the family or Eliza. The funds are directed to stop the disease for all children. More specifically, it went to urgent needs in Drug Production for a planned 2015 clinical trial, as well as clinical trial needs at the academic hospital.
Without this funding, Eliza and other children with Sanfilippo would not have a chance at life. But thanks to the video, Saving Eliza was shared in hundreds of news articles, blogs, and covered (often multiple times) by top websites like ABC, NBC, Fox, Wall Street Journal, Huffington Post, People, Daily Mail UK, BBC and many others. It also earned them features on The Today Show, The Doctors TV Show, Inside Edition, Al Jazeera America, HLN, and 60 minutes Australia… to name a few.
Saving Eliza stands as an amazing example of the power of the Internet, the kindness of strangers, and how a video that touches the heart, even one that never truly went 'viral', can make a significant impact to stop a disease and potentially save thousands of children's lives.
