“Saving Eliza” launched 10 years ago, eventually raising record-setting $2 million to cure Sanfilippo Syndrome

April 4, 2024

What do you do when you’re told that your young, energetic, talkative child has a terminal illness that will rob her of every skill and ability, cause her pain and suffering, and then take her life likely in her teens?

This is the reality Glenn and Cara O’Neill faced when their daughter was diagnosed in 2013 with Sanfilippo Syndrome.

Sanfilippo Syndrome is a terminal children’s illness, likened to Alzheimer’s but in children, and currently has no cure. But in 2013, promising gene therapy research was underway and ready for a first-ever clinical trial. However, like in so many rare diseases, significant funding was needed to make the clinical trial happen.

So Glenn and Cara did what many parents of children with rare disease do: they set out to raise the funds so desperately needed for the research that might save the life of their child and others with the disease. They knew that, even if they were successful in raising the money, there was no guarantee that their daughter Eliza would be picked for the trial. But hope for Eliza and other children was enough.

Their goal: To raise a staggering $2 million so a gene therapy program could move forward at Nationwide Children’s Hospital.

After hosting several local fundraising events, Glenn and Cara knew something bigger would be needed to raise the $2 million needed. Glenn dove into unfamiliar waters of crowdfunding and viral videos.

Via a network of strangers, the renowned videographer Benjamin Von Wong answered Glenn’s plea for help.

Von Wong traveled to the O’Neills and spent days camped out in their home, shooting and editing a video sharing Eliza’s story and the hope for a cure.

On the morning of April 2, 2014, a three-minute video “Saving Eliza” was launched, to benefit Cure Sanfilippo Foundation and help fund two clinical trials for Sanfilippo Type A and Type B Gene therapy.

“Saving Eliza” immediately went viral and in 15 days, it raised $500,000.

Shortly thereafter it reached $1 million, becoming the largest GoFundMe campaign ever at the time, and the first to reach the $1 million mark. Later in the year, it passed $2 million, again becoming the first GoFundMe to pass that milestone.

“Saving Eliza” put Sanfilippo Syndrome on the map and was covered by The Today Show, Inside Edition, The Doctors TV show, and People magazine, along with hundreds of other news outlets nationally and worldwide

More than 37,000 kind and caring donors contributed to the “Saving Eliza” campaign.

“And it happened, thanks to some very special people — strangers at the time — who responded to our call for help, who certainly didn’t have to. Karen Cheng, DL Cade, Ben Von Wong, Guillermo. And a huge thanks to the family of Izzy for being part of this important video that helped change the landscape for Sanfilippo research,” said Glenn in a post on Cure Sanfilippo Foundation’s Facebook and Instagram.

“We are so thankful for the change everyone who touched this campaign created. You’ve made a difference that continues a decade later through the work of Cure Sanfilippo Foundation. We move closer to effective and available treatments, thanks to you.”

The gene therapy programs were able to be funded and treated more than 30 children. The learnings from those trials continue to be used and built upon to this day and have helped bring a first-ever treatment for Sanfilippo Syndrome even closer to reality.

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