Day 14: Iowa City to Des Moines, IA

Today’s ride was hot, humid, and hilly. Who said Iowa was flat? The rolling hills were never-ending, and the farm fields stretched in every direction as a far as the eye could see. Deer were everywhere. It was a great day for riding.

Interview with NBC in Des Moines

Interview with NBC in Des Moines

It was also a great evening with the Notre Dame Club of Des Moines at Tursi’s Latin King Restaurant, a well-known Italian eatery. They had the best chicken I’ve ever tasted, and the meatballs melted in my mouth. I gave a Universal Notre Dame Celebration talk about Father Hesburgh, and included an update on our progress in the fight against NPC as well as our broader efforts against rare diseases.

Dinner ended early, and I was still thinking about Notre Dame’s commitment to fighting rare diseases. This is such a natural role for the University to take as it is a clear example of our founding mission to be a force for good in the world. It is an arena where our call to top-tier research and discovery, our call to healing, and our call to care for the poor and suffering converge. As our mission statement says, “The University prides itself on being an environment of teaching and learning that fosters the development in its students of those disciplined habits of mind, body, and spirit that characterize educated, skilled, and free human beings. In addition, the University seeks to cultivate in its students not only an appreciation for the great achievements of human beings but also a disciplined sensibility to the poverty, injustice and oppression that burden the lives of so many. The aim is to create a sense of human solidarity and concern for the common good that will bear fruit as learning becomes service to justice.”

Rare diseases by definition are not a market large enough to get the attention of profit-driven institutions. Notre Dame is involved in this work because of our mission, with the tremendous support of our alumni, collaborators, and friends. This is the kind of institution we are. As Father Jenkins said in his inaugural address, “The world needs a university that not only contributes to scientific breakthroughs, but can address the ethical implications of scientific advances by drawing on an ancient moral and spiritual tradition. The world needs a university—grounded in a commitment to love one’s neighbor—to debate how we in prosperous societies will respond to the grinding and dehumanizing poverty in which so much of the world lives. The world needs a university that graduates men and women who are not only capable and knowledgeable, but who accept their responsibility to serve others—especially those in greatest need.”

I think of our researchers who work so diligently to discovery the mechanisms of these rare diseases so we can have targets for healing them. I think of the undergraduate students, graduate students, and postdoctoral associates who work with them and gain that “disciplined sensibility” that our mission statement describes. I think of the loyal support and encouragement of our administration as we tackle these great challenges. Most of all, I think of the families impacted by these diseases—the Parseghians with NPC, the Sarbs with NKH, and so many others. It is such a privilege to be part of the Notre Dame community that puts its mission into action to elevate the well-being of people around the world.

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