Notre Dame Videos
- 38:41Advancing Rare Disease Research and Patient Advocacy | Notre Dame StoriesIn the United States, a disease must affect fewer than 200,000 people to be considered rare, but there are over 8,000 known rare diseases. That leaves the chances of being diagnosed with a rare disease in the U.S. at around 1 in 10, yet research and funding remain scarce.Rare diseases, commonly referred to as "orphan diseases," are often overlooked. As a result, effective treatments exist for less than 5% of all rare diseases, leaving millions of people without viable options.Notre Dame is committed to understanding, treating, and advocating for those affected by rare diseases. This episode of Notre Dame Stories explores how researchers at the Boler-Parseghian Center for Rare Diseases are driving groundbreaking research to uncover new treatments and bring hope to patients and families.Guests • Barb Calhoun, Reisenauer Family Director for Patient Advocacy Education and Outreach; Director of Minor in Science and Patient Advocacy • Sean Kassen, Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame----- Video Chapters 00:00 Introduction: Fighting for those with rare diseases 04:57 Barb Calhoun shares her Notre Dame story 06:11 Barb discusses the benefits of rare disease research in a non-medical school 07:21 Barb talks about the Patient Advocacy Minor offered at Notre Dame. 09:07 Barb shares how the Patient Advocacy Program impacts students 11:57 Barb and Jenna share the inspiring story of a student with Friedreich's ataxia 16:24 What it means that Notre Dame is committed to patient advocacy 18:41 How Dean Santiago Schnell leads with compassion and serves as a role model to others 21:57 Sean Kassen shares his Notre Dame story 24:48 How the Boler-Parseghian Center for Rare Diseases came to be 28:56 Sean shares his personal motivation for working with those with rare disease 29:54 How Notre Dame connects with families for rare disease research 33:12 Sean talks about recent and upcoming breakthroughs in rare disease research 35:04 Sean shares new Niemann-Pick Type C treatment options available 36:11 Sean tells us why rare disease research is so important to him----- Show links Episode page (https://stories.nd.edu/podcasts/advancing-rare-disease-research-and-patient-advocacy/) Fighting For website (https://fightingfor.nd.edu/) Fighting for those with Rare Diseases (https://fightingfor.nd.edu/2024/fighting-for-those-with-rare-diseases/) Patient Advocacy Initiative (https://patientadvocacy.nd.edu/)----- Notre Dame Stories is the official podcast of the University of Notre Dame. It was created by the Office of Public Affairs and Communications and hosted by Jenna Liberto with Executive Producer Andy Fuller. It was produced by Jenna Liberto, Josh Long, and Staci Stickovich. Videography was done by Zach Dudka, Josh Long, Tony Fuller, and Michael Wiens. Original music was provided by Alex Mansour. Listen and subscribe wherever you get your podcasts.
- 38:42Advancing Rare Disease Research and Patient Advocacy (Audio)In the United States, a disease must affect fewer than 200,000 people to be considered rare, but there are over 8,000 known rare diseases. That leaves the chances of being diagnosed with a rare disease in the U.S. at around 1 in 10, yet research and funding remain scarce.Rare diseases, commonly referred to as "orphan diseases," are often overlooked. As a result, effective treatments exist for less than 5% of all rare diseases, leaving millions of people without viable options.Notre Dame is committed to understanding, treating, and advocating for those affected by rare diseases. This episode of Notre Dame Stories explores how researchers at the Boler-Parseghian Center for Rare Diseases are driving groundbreaking research to uncover new treatments and bring hope to patients and families.Guests • Barb Calhoun, Reisenauer Family Director for Patient Advocacy Education and Outreach; Director of Minor in Science and Patient Advocacy • Sean Kassen, Director of the Ara Parseghian Medical Research Fund at the University of Notre DameShow links: • Watch on YouTube (https://youtu.be/P1B-7jm2s4Q) • Episode page (https://stories.nd.edu/podcasts/advancing-rare-disease-research-and-patient-advocacy/) • Fighting For website (https://fightingfor.nd.edu/) • Fighting for those with Rare Diseases (https://fightingfor.nd.edu/2024/fighting-for-those-with-rare-diseases/) • Patient Advocacy Initiative (https://patientadvocacy.nd.edu/) -----Notre Dame Stories is the official podcast of the University of Notre Dame. It was created by the Office of Public Affairs and Communications and hosted by Jenna Liberto with Executive Producer Andy Fuller. It was produced by Jenna Liberto, Josh Long, and Staci Stickovich. Videography was done by Zach Dudka, Josh Long, Tony Fuller, and Michael Wiens. Original music was provided by Alex Mansour. Listen and subscribe wherever you get your podcasts.
What Would You Fight For?
- 2:01Fighting to Serve Others Above SelfIn 2022, Eric Goins was deployed to Poland as a U.S. Army Signal Corps Officer following Russia’s invasion of Ukraine. Today, he’s pursuing a dual MBA and Master of Global Affairs degree at Notre Dame—and is also a walk-on kicker for the Fighting Irish football team. After graduation, Goins plans to continue serving his country as a civilian.Notre Dame football coach Marcus Freeman, whose father served in the United States Air Force, has a deep appreciation for the military. Freeman expressed pride in welcoming Goins to the team, recognizing the unique perspective and dedication veterans bring to the field.While Notre Dame’s ROTC program has long been at the core of campus military engagement, a growing number of active duty members and veterans are now part of the University community. Retired U.S. Army Lieutenant Colonel Ken Heckel ’96, director of Notre Dame’s Office of Military & Veterans Affairs (OMVA), is leading efforts to expand support for this group.“For the millions of veterans who’ve selflessly served our country, Notre Dame has both the honor and the responsibility to serve them,” Heckel says. His work is helping to build a robust military community on campus, ensuring veterans and active duty members feel supported as they pursue their education.Learn more at fightingfor.nd.edu/2024/fighting-to-serve-others-above-self
- 2:01Fighting for Religious LibertyIn Arizona’s Tonto National Forest, Chi’chil Bildagoteel, known as Oak Flat, is a sacred space for the Apache and other Native tribes. Countless generations have used the site for religious and coming-of-age ceremonies and have gathered medicinal plants and acorns from its majestic oaks.But Oak Flat is in danger. In 2014, a land swap deal offered Oak Flat to a mining company that intends to place a copper mine leaving the site unsafe for humans. Apache Stronghold, a 501(c)(3) nonprofit community organization made up of Native and non-Native allies, are intent on saving Oak Flat.While the Notre Dame Lindsay and Matt Moroun Religious Liberty Clinic, launched in 2020, isn't representing the Apache Stronghold, it's very supportive of its mission and has filed multiple amicus briefs in support of protection for Oak Flat. The Clinic, one of the world's leading academic institutions on the subject, is representative of Notre Dame's values. Informed by its Catholic character, the University has always supported and promoted religious liberty as a fundamental human right.Marcus Cole, the Joseph A. Matson Dean and Professor of Law at the Notre Dame Law School, is careful to note that religious liberty encompasses all faiths, and those without faith.“The Religious Liberty Clinic was created because our freedom of conscience, our freedom to believe, and then live according to our beliefs, is the most important and fundamental freedom that we have. Not just as Americans, but as humans,” he said.
