Ever on a quest to better understand how rare disease stories get made, I became fascinated watching Strangers give a chance at life which is the incredible story about the making of a viral video for the Saving Eliza campaign aimed at urgently advancing research for Sanfilippo Syndrome patients. At calendar times, where greater demand for stories may increase storytelling stress, we need reminders that we are not alone as storytellers.

I can all too well remember the start to the year in which I was making my first digital story. With the holidays over and no sign of spring, I was starting to dread the project laid out before me, which had the Lysosomal Disease Network’s WORLD Symposium, held in February, pinned as the launch deadline. It wasn’t that I’d left the entire assignment to the last minute. There had been months of prior preparatory work, and all the necessary tools —a completed storyboard, narration script, selected images, microphone, and newly installed video editing software—ready to sculpt the perfect story.

1 Emma's Garden illustrationAssignments like this were supposed to be easy for the young professionals of my generation who had grown up with home computers. As with any new task, I turned to Google for answers on how to construct an effective story. For insights I viewed countless digital story examples. On the Internet, I found no shortage of useful and freely available how to videos, step by step instructions, and expert advice. I picked up new storytelling skills quickly, built confidence, and had everything moving forward— until it all fell apart when it came time for the final editing stage. As my inexperienced fingers fumbled with the mouse and keyboard, I was confronted with the realization that having a story and a desire to share doesn’t automatically lead to the product we’re hoping to produce. While invaluable as a resource, the Internet can’t always smooth the learning curve as quickly as we need it to. It was time to call in reinforcements.

A panicked email to my little sister is what led her artist friend Alice to my doorstep. Alice wasn’t exactly a professional video editor, but rather a creative mind who, from the moment she was introduced to the project, got excited and said of course we can do this. She didn’t ask about compensation but sat down at the kitchen table, turned my one bedroom apartment into an editing studio, and didn’t leave my side until we were ready to upload to YouTube. And this was not the first example of this level of unconditional support for the project; various people had given invaluable assistance throughout the creation process. My parents had been interviewed, my nurse from childhood assisted me in accessing and deciphering my old medical file, my sister created original illustrations, a friend who was a writer edited the script, and other acquaintances eagerly helped with the translation of subtitles into various languages. My individual rare disease story, Emma’s Garden: Growing with Gaucher, had taken a community effort to create.

The power of community to move a story was echoed in an interview with Glenn O’Neill, the father of now five-year-old Eliza, whose video story garnered viral attention in 2014, helping to raise over $2.2 million for research. Their primary focus is a planned gene therapy clinical trial at Nationwide Children’s Hospital in Ohio that is hoped might cure the terminal childhood disease Sanfilippo Syndrome, and save Eliza’s life. Glenn admits that prior to his daughter’s devastating diagnosis he had no experience telling stories and posted on Facebook just ten times a year. That changed overnight with a lofty commitment to fundraising. Despite their best efforts, and having already raised about $200,000 just six months into their campaign, the O’Neill’s woke up to the realization that golf tournaments, runs, and lemonade stands weren’t going to raise nearly enough to move science forward in time for their daughter.

“We needed to stop kidding ourselves, stop waiting for an angel donor to land, and instead find a way to reach a much larger audience with our story,” explains Glenn.

Glenn had already made one video on his own for the GoFundMe fundraising page he set-up, but saw that something more engaging would be required to reach enough people to really make a difference. Feeling desperate, Glenn started scouring the Internet late at night, searching for answers on how to sell your story, use social media and make a viral video. These questions wouldn’t typically be considered parenting advice, but Glenn knew that in order to give his daughter a chance at continued healthy development, they needed the right story. He was particularly excited discovering the well-known and uplifting Children’s Hospital at Dartmouth-Hitchcock rendition of Roar and at first wondered if a similar video could be created for Eliza’s cause. Quickly Glenn concluded that, “You can look at other stories for inspiration but you have to find your own. While we were living our story it didn’t mean that we knew how to present it.”

Despite the challenges, Glenn never shied away from asking smart people for free guidance on creating a story that would have impact. Glenn’s philosophy remains, “If I had the opportunity to sit down with Bill Gates I wouldn’t ask him for money, I’d ask for his advice.” Repeatedly seeking out help is what eventually led the Canadian artist, Benjamin Von Wong, a stranger, to the O’Neill’s doorstep free of charge. Over eight intense days, Von Wong shot 40 hours of footage at their home, slept on their coach, edited the entire time, and soon after created for the family the #SavingEliza video—a key ingredient to the overwhelming success of their fundraising efforts.

Glenn says that they put their complete trust in Von Wong’s skills, but it’s evident from hearing Glenn and his wife Cara interviewed during the video, that they own their story. Despite Von Wong’s immense talent and generosity with the project, without Glenn and Cara’s willingness to open their lives and share something very personal, there would be no viral video. The O’Neil’s were already committed storytellers; Benjamin Von Wong’s mastery helped them to be heard. As Glenn reflects, “If we didn’t start when we did, who knows where we’d be, but definitely not as far as we are.” Storytellers can’t wait for a film crew to arrive but they certainly shouldn’t shy away from inviting help in. Sharing our stories takes many hands and many tries. Until the day when appropriate treatment options and care is available to all rare disease patients, our stories have no shelf life. We can’t afford to turn down any request to share.

For candid tips, including how to tell a good story, be sure to review Benjamin Von Wong’s post: The recipe to a successful viral fundraiser.

You can tweet about this RARE Daily series using the hashtag #RunningOnStories.

 

 

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