StoryFile, an AI startup redefining the media landscape through its proprietary storytelling technology, announced the launch of its first educational project dedicated to supporting people with ALS, giving them access to life-improving resources through the use of crowd-sourced stories, ‘how-to’ knowledge sharing, and more. The idea came from Eric Weinbrenner, founder of grassroots ALS nonprofit Paint For A Cure, following his own struggles to navigate living independently with ALS, as he lost all mobility and ability to communicate.
“ALS is a diagnosis that hits hard and fast,” said Weinbrenner. “Right now, it’s a losing battle and a race against the clock for families looking for answers for how to live as independently and comfortably as possible. Each moment matters and is valuable. The purpose of this resource is to make access to trusted information – and real-world tips and advice – more quickly available to those with ALS so they can spend the precious time they have on what is most important: family.”
Topics that are critical to independent living, but often nuanced and confusing, such as how to use chair lifts, toilet risers, feeding tubes, assisted talking technology, plus real-life knowledge about how the disease progresses, body changes, loss of movement, and maintaining intimacy and family connections with rapid physical deterioration will all be covered through StoryFile.
ALS StoryFile: Your Questions Answered
ALS StoryFile: Your Questions Answered, now live on Paintforacure.org, allows users to ask questions and get answers using an interactive educational interface and artificial intelligence. Phase one of the resource includes over 200 questions answered by Weinbrenner and his caregivers about his changing experiences with ALS, and more than 3 hours of interactive interviews with Dr. Todd Levine, ALS expert and neurologist based in Scottsdale. Through the ALS StoryFile platform, anyone visiting the Paint For A Cure website will be able to type or speak a question about ALS, and the sourced answers from Weinbrenner and Dr. Levine will be shared through an AI interface that allows for a video response directly from them using StoryFile’s Conversa technology.
“StoryFile’s Conversa technology applies the power of the human conversation to provide users with a way to ask questions and get answers in a personal and engaging experience,” said Ari Palitz, StoryFile’s Chief Creative Officer. “From the comfort of their own home, people living with ALS can quickly ask questions and receive trusted answers from Eric and others in a way that feels personal, as opposed to navigating multiple websites and internet searches to try and find out the answers they’re looking for when it comes to living with ALS.”
As part of the partnership, StoryFile and Paint for a Cure are also making the story sharing technology available to families living with ALS to share their stories with their own families and with the broader ALS community, archived through video storytelling technology.
“Storytelling is an integral part of the human experience,” said Palitz. “People with ALS quickly lose the ability to verbally communicate with others, and this technology provides them with an incredible gift to forever preserve their stories and connect with the world.”
StoryFile’s ALS specific Storypack is now available, so those with ALS and their families can share their journeys using the easy, home-use version of the technology called StoryFile Life. The Storypack will provide a list of all the questions they need to create their own AI interactive experience like Weinbrenner’s. Users can control who they share the resulting StoryFile with through privacy settings – whether it just be for family or part of the bigger ALS conversation (and added to the public archive).
“We hope that the ability to record stories, and share videos and memories with StoryFile Life will give other families with ALS a vehicle to capture and share special moments with this generation and the next,” said Weinbrenner. “For my kids, the videos are now the only way they have to remember my voice and hear stories like how mom and I first met, and that is priceless.”