2025 ATCNE Presentation: Giving Ben A Voice
The Founders of the NARBE Foundation was selected as guest speakers at the 2025 Assistive Technology Conference of New England. This video shares the story of how their family used creativity and AI to give Ben, a nonverbal adult living with TUBB4A-related leukodystrophy, a way to communicate and play again. It all began with a simple question: what do you do when the technology that exists is not enough? Ben has always been joyful, competitive, and playful. As his condition progressed, he gradually lost speech, mobility, and independence. Commercial assistive technology could not keep up. Eye tracking failed due to nystagmus, head tracking was unreliable, and none of the available tools brought him joy. Games had always been Ben’s greatest source of freedom, yet most assistive tools were designed for survival, not happiness. During the pandemic, Ben’s health declined rapidly. That crisis brought the family back together. Nancy and Ari moved across the country, rebuilt Ben’s care, reno...