Three years ago, writer/director Sean Fahey realized that people with dementia can remember the stories of their lives, but they cannot control when those memories will actually come and go. So he decided to do something about it.
“I was putting together a pitch for an Alzheimer’s Association PSA about stigmatization,” he explains. “I noticed that people with the disease are underserved and undervalued and taken advantage of.”
Inspired by the vision of “an old antique suitcase filled with Polaroids,” he embarked on a journey to help preserve “this amazing legacy that they can leave for their families.”
It reached a milestone last week with the launch of a crowdfunding campaign to market “Butterfly,” which may be the first dementia-friendly digital application in the world.
Butterfly enables people to record stories, thoughts and ideas by uttering a voice command and, if they desire, to share these memories with any number of friends, family members and health professionals.
“It’s almost an app-less app,” says Fahey. “It’s a hands-free, always-listening, voice detection experience.”
Transforming film into social action is familiar territory to Fahey, who is on the roster of Ted Lega’s Chicago-based production company, Bow + Arrow. His feature film, Bailout, is an award winning, cross continental road trip through the destruction and victims left in the wake of America’s housing crisis.
The creative process to make Butterfly, he says, required the same writing, producing and funding skills that he developed as a filmmaker.
“Filmmaking and development certainly do have parallels,” he continues. “You start off amorphous, a monolith honoring an idea, and then you find collaborators to make something magical that will resonate.”
Besides researching the disease through forums from Los Angeles to Washington DC, Fahey interviewed and interacted several people who suffer from it.
Most notably among them was Sandy Halperin, who was diagnosed with early onset Alzheimer’s in 2010. As the subject of Sanjay Gupta’s CNN series, Sandy’s Story, Halperin allows the network to document his mental, physical and spiritual condition during every episode.
“I saw him on CNN, found him on Facebook and sent him a message saying, ‘hey could you look at this video I made,’” Fahey recalls.
Over the next several months, their relationship would grow from a few emails every now and then to a full on friendship — “I talk to him all the time and I just love the guy,” he adds.
Halperin is one of several people on Butterfly’s board of advisors currently living with dementia. His input was essential to the app’s development.
“Sandy has tried it and told us what works and what does not,” Fahey says.
Although Butterfly’s interface was designed to act like Amazon’s Alexa, the app that it controls is made specifically for people with dementia.
Users not only have the option to share their comments with friends and family on social networking sites, but they can also choose to allow primary care physicians, insurance providers and pharmaceutical companies to access them.
Ideally, this will increase the professional understanding and treatment of the disease.
Those who select this option will enjoy the app for “relatively free,” says Fahey. Others will pay a small monthly subscription fee that he estimates will cost about a dollar.
On May 10, Butterfly’s parent company, WindowMirror, opened an investment round on StartEngine, an equity crowdfunding site. The proceeds will be used to finish Butterfly’s prototype and bring it to market. The effort was developed through an accredited platform that works closely with the Security and Exchange Commission.
With the US spending $226 billion on dementia-related care treatment last year and 10,000 baby boomers turning 65 every day, Fahey is confident that investors will recognize Butterfly’s potential.
But the greatest reasons that he wants to bring life to this “moonlighting passion project” are personal.
“I’m forty and I lost my dad when I was in my twenties,” he says. “What was it like for my dad to be forty? Is there something I can draw from his story to help me?”