In the fall of 2016, our team received the news that Jon’s son, Finn, had been diagnosed with Hunter Syndrome, a rare terminal disease, and that their family was about to embark on the most difficult journey they’d ever faced.
A few months passed, and early one morning Jon asked the team to gather together. The conversation was simple: there was an FDA-approved clinical trial for gene therapy that could serve as a treatment for Hunter Syndrome. It was in development by a team of doctors in Ohio, and by all means looked like it could be a cure for the disease. The treatment was all set for a human research trial, the only barrier now was money. The doctors needed 2.5 million dollars to move forward.
After explaining all of this, Jon said he thought that it was possible our team could help lead the charge to raise funding for the clinical trial. There are more than 2,000 kids currently diagnosed with a form of Hunter Syndrome, the vast majority of which will not live to see their teen years. We had seen the power of effective storytelling before and knew that this was a chance to help save those kids’ lives. It was a chance for hope.
Without hesitation our team agreed to go all in, and together we began discussing how to bring a fundraising campaign to life.
Our contribution to the Project Alive campaign was two-fold. First, we helped Project Alive with a new website and re-branding initiative. Second, we created a series of documentaries spotlighting five children in different stages of the disease.
The team helped with a complete overhaul of the Project Alive website, including streamlining the donation process and helping with social media and email marketing.
From there we began laying the foundation to create a documentary series that would tell the story of children affected by Hunter Syndrome. In all of this, we knew that we couldn’t do this project on our own. Our first step was to develop an in-depth treatment to help explain the purpose of the project. Once we shared the story with others in the film community, we began to receive an overwhelming amount of support and offers for help.
Alongside a long list of talented collaborators, we began traveling across the country and over the course of a month, documented the stories of five families living with a Hunter Syndrome diagnosis. Each short film serves as a different perspective on what life with Hunter Syndrome is like, both for the child and for their family. Our hope was to bring awareness; to start by giving viewers a look at the reality of this disease, and end with a call-to-action for what the future could be for these kids.
Results & Awards
The Project Alive series premiered at the Rare Disease Film Festival and was awarded a regional gold award by the American Advertising Federation for 2017. It was selected for a Vimeo Staff Pick and was featured in numerous online publications including: Desiring God, Short of the Week, and Omeleto.
As of July 2018, Project Alive has raised over 2.5 million dollars and the manufacturing of the gene therapy drug is underway.
This project reminded us of the power of community. The love and support that our friends and collaborators brought forth to this project is beyond what we could have ever expected. We continue to do all we can to spread awareness and raise funds for gene therapy.
The films are just a small piece of the puzzle, and we are proud to be a part of the fight for the lives of children diagnosed with this disease.
If you’d like to learn more about the campaign to save the lives of kids with Hunter Syndrome, please visit Project Alive.