When 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
More from What Would You Fight For?
- 2:01Fighting to Combat America's Mental Health CrisisWhile 54 million people in the United States experience mental illness, fewer than half of adults and children with a mental health disorder ever receive treatment, often due to a lack of mental health resources in communities.The University of Notre Dame is working to change that. In September 2024, Notre Dame broke ground on the Wilma and Peter Veldman Family Psychology Clinic, which is expected to open in 2026.Once at full capacity, the clinic will serve more than 1,500 residents in the local area through mental health assessment, intervention, and prevention services. It will also foster partnerships with community organizations to expand access to mental health care throughout the South Bend, Indiana region.Learn more: https://go.nd.edu/FightingForMentalHealth
- 2:01Fighting to Improve Education PoliciesThere are 18 million adults in the United States who do not possess a high school diploma. In many states, after age 21 they are no longer eligible to receive one, and must get a GED, which typically offer less promising outcomes.Goodwill saw this gap and launched the Excel Center, an adult, tuition-free adult charter school that also offers services like childcare and life coaching, to ensure the success of their students.They saw what they believed was great success at their flagship, Indianapolis location, but they lacked data to help it grow, so they invited Notre Dame’s Wilson-Sheehan Lab for Economic Opportunities (LEO) to assess their program.Its study showed graduates from the Excel Center saw a 40 percent increase in earnings in five years. Graduates were also more likely to move into jobs that became careers, and to support their families long-term.Based on this data, states like Arizona have changed their legislation and pledged money to build Excel Centers.Learn more: https://go.nd.edu/ImproveEducationPolicies
- 2:01Fighting to Defend Human RightsWhen Nobel laureate Maria Ressa was arrested for cyberlibel in the Philippines she turned to Notre Dame Law professor Diane Desierto.As the director of the Law School’s new Global Human Rights Clinic, Desierto has fought for human rights primarily in the Philippines and other Southeast Asian countries. She's working to foster community amongst Notre Dame Law students and human rights defenders across the world."Notre Dame is one place that has genuine freedom to do all of it and be all of it. Where we strive to realize the human rights outcome.”Learn more: https://go.nd.edu/f5eceb
- 2:01Fighting to Combat the Opioid CrisisOpioids, specifically fentanyl, are currently the leading cause of death for adults ages 18 to 45. They are highly accessible, available even on mainstream social media, and often lethal. Fentanyl is also often used as a filler in other drugs, so many people don’t even know they’re taking it.Illicit drug markets are constantly evolving with technology, making them difficult to track and stop. Fanny Ye, associate professor of Computer Science and Engineering at the University of Notre Dame, is developing a robust, AI-powered framework to dismantle the systems that allow for opioids to be sold on both social media and the dark web.Learn more: https://go.nd.edu/b35248
- 2:01Fighting to Improve the Lives of Sick ChildrenWhen COVID-19 hit in 2020 it sent Notre Dame students to their homes across the country and locked down Ian, a 10-year-old diagnosed with leukemia who was paired with Notre Dame Men's Lacrosse through the Fighting Irish Fight for Life program, in his house.To connect, Max Manyak '23 began sending Ian videos every day, eventually getting his teammates involved. The videos had a profound effect on Ian and his nurse at Beacon Children's Hospital asked if they could create more videos for other patients.That's when Pediatric Pep Talk was born.Learn more: https://go.nd.edu/52d74d
- 2:01Fighting for Breast Cancer PatientsThe breast cancer diagnosis was scary for Jennifer Ehren ‘99, but what was worse was the chemotherapy that rendered her sicker than doctors had ever seen.Because most chemotherapy patients don’t know until after their treatment if it was successful, her husband, Tom O’Sullivan, an associate professor of electrical engineering, wondered if there was a safe, easy, and inexpensive way to monitor the tumor during treatment. When one didn’t exist, he created it.The result is NearWave, a handheld device that uses light to monitor changes in a tumor. NearWave allows doctors to track whether a woman will respond to a chemotherapy regimen.Learn more: https://go.nd.edu/95757f
