Fighting for the Dignity of Independence
In 2014, Shawn Sexton ’88 was diagnosed with bulbar onset sporadic ALS. Realizing he would gradually lose his ability to walk, communicate and eat, he and his son, John, set out to create opportunities for independence. Together they designed EyeDrive, an assistive technology that allows Shawn to adjust and drive his wheelchair using eye gaze technology. EyeDrive is one of three current solutions provided by John’s startup, LifeDrive, which also provides voice- and caregiver-controlled solutions.John is now a senior at Notre Dame and a participant in the Grand Challenges Scholars Program, which, along with the IDEA Center, has helped move LifeDrive from an at-home project to an expanded medical device company. John continues to lead its progress to commercialization and distribution, and he hopes it will soon help other patients like his dad find more independence.“To try and get this to patients by the time that we graduate is daunting and challenging, but it pales in comparison to the needs of those patients that we’re trying to serve,” John says. He explains that getting LifeDrive to patients is so important because not only does it give them technology and independence, but it gives them hope. That hope, he says, can be life-giving.Learn more: https://go.nd.edu/DignityOfIndependenceFF
More from What Would You Fight For?
- 2:01Fighting to End PovertyIn Dandora, Kenya, a sprawling neighborhood in Nairobi, housing for 250,000 people is built around the city’s largest dumpsite. Life near a large trash heap exposes the population to problems ranging from illness to unemployment to extreme poverty.Many of the town’s residents spend their days wading in the trash, looking for bits of aluminum and plastic that they can exchange for a few dollars to support their family. Others, typically women, run roadside stands selling goods like fruit or medications. For many families, the profits from these microenterprises are the only way to put food on the table or to send children to school.Notre Dame and its Ford Program in Human Development Studies and Solidarity have been invested in Dandora for several years. Research projects and a Holy Cross parish have taken root. In speaking with the local population about their needs, the Ford Program asked a trio of Notre Dame economists — Wyatt Brooks, Kevin Donovan and Terry Johnson — to come to Dandora to explore problems surrounding unemployment.For more information: http://ntrda.me/FFEndPoverty
- 2:01Fighting for the Lives of ChildrenWhen your child is diagnosed with a rare, genetic disease, it feels like you’re rolling down a mountain, just waiting to hit rock bottom, says Doug Berns. When his daughter, Samantha, was diagnosed with Niemann-Pick Type C, an incurable, neurodegenerative disorder, he and his wife watched as Samantha’s energy depleted, her balance became shaky, and her laughter quieted.At Notre Dame, researchers in the Boler-Parseghian Center for Rare and Neglected Diseases seek to identify and advance treatments for a number of rare diseases, including Niemann-Pick Type C.For more information: http://ntrda.me/LivesofChildren