Fighting for Those with Rare Diseases
With 10,000 known rare diseases, the chances of being diagnosed with one in the United States are 1 in 10. That’s 30 million Americans affected. Fewer than 5% of rare diseases have an effective treatment leaving millions without options.At Notre Dame, studying rare diseases is a priority that places patients and families at the center of our work.The Boler-Parseghian Center for Rare Diseases was one of the first basic science rare disease research centers in the country, and Notre Dame Science recently launched the nation’s first minor in rare disease patient advocacy.https://go.nd.edu/FightingForRareDiseases
More from What Would You Fight For?
- 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
- 1:01Still fightingThe beloved What Would You Fight For series celebrates 100 episodes, and Notre Dame continues its fight to improve the lives of others
- 2:01Fighting For Our Cultural HeritageWhen Russia invaded Ukraine in February 2022, the world watched in disbelief and horror as one sovereign nation invaded another.The University of Notre Dame has had a long relationship with the Ukrainian Catholic University, the first Catholic university in the post-Soviet world. When our colleagues, our partners and our friends were in danger, we asked how we could help.Professors Bill Donaruma and Ian Kuijt traveled to Ukraine to teach students on the ground the tenets of archeology and film so they could begin to document their important cultural sites, which are under constant threat.Learn more: https://go.nd.edu/0a0a45
- 2:01Fighting For Those With Cystic FibrosisIreland has the highest rates of cystic fibrosis in the world. One in every 19 people carries the gene for the genetic condition that damages the lungs and other organs through repeated infections.Together with partners at Trinity College Dublin, two Notre Dame professors, Al Cerrone ‘09 and Rob Nerenberg, are considering new ways to treat the disease. Because cystic fibrosis patients often take antibiotics, resistance and toxicity are chronic fears. Finding ways to make the antibiotics more effective, even reducing dosage amounts, could prevent side effects.The multidisciplinary team is looking at unusual combination treatments involving antibiotics and ultrasound, which have shown remarkable effectiveness.Learn more: https://go.nd.edu/7d31ab