The uplifting story of Lisa and Rob Moss of Alexandria, Va. and their innovative method for coping with their 6-year-old son Evan’s epilepsy disorder has taken the Filmmaker’s and Fan Favorite Awards at the American Academy of Neurology’s Neuro Film Festival 2010. The short film, Tracking Evan: Caring by the Numbers, recounts the story of a child diagnosed with Tuberous Sclerosis Complex and the immense challenges it presented for his family. Evan’s parents, Rob and Lisa, responded to the challenge by creating SeizureTracker.com, a free tool now in wide use throughout the epilepsy community that doctors have described as revolutionary. Lisa Moss serves on the Board of Directors of the Epilepsy Foundation.
Filmmaker Peter von Elling, a friend of the Moss Family, shot and submitted the film for this year’s festival. “Taking the top prizes at the Neuro Film Festival is an amazing honor,” said von Elling. “Taking those prizes while spreading the word about SeizureTracker and the fantastic impact it has already had upon families all over the world makes the awards that much more meaningful to me.”
Shot on location at the Moss home and at a local playground, von Elling’s film uses moving interviews and fascinating effects to tell a story of personal challenges that gave birth to a wider good. “We needed a better way to give Evan’s doctors detailed information about his seizures than those tiny, archaic sheets we were given,” said Rob Moss. “It was clear that applying technology to the problem could improve the care our son would receive.”
With no professional programming experience, Rob taught himself Web design and database programming at night after the children went to bed while Lisa worked on designing the user interface of the site. After a year, they had built an application that not only easily logged pertinent information about Evan’s seizures, but produced standardized reports with graphs showing interactions between medications and a host of other facts in relation to Evan’s seizures.
Conceived as a way to help their own family, Rob and Lisa released SeizureTracker.com to the entire community after their doctor saw the clear improvements in seizure logging that the tool had effected and suggested making it widely available. Those reports, now in use by families worldwide, are becoming the new standard for doctor-patient communication and have had a real world impact on how a patient’s seizure disorder is being treated.