The Pittsburgh Foundation

Finding a Second WindRichard S. Caliguiri Endowed Chair at the University of Pittsburgh

David Caliguiri stands in the plaza of the City County Building in Downtown Pittsburgh. Behind him is a statue honoring his father, Richard S. Caliguiri, which overlooks Grant Street.

Jeffery Fraser

David Caliguiri, as told to Jeff Fraser (pictured), a freelance journalist living and working in Pittsburgh.

PITTSBURGH MAYOR RICHARD CALIGUIRI, one of the city’s most beloved elected officials, died on May 6, 1988, while in office. The disease that led to his death at age 56 is amyloidosis, a condition that causes a buildup of amyloid protein on organs such as the heart, liver and kidneys. Belying its rarity, the disease would later claim the lives of former Pennsylvania Gov. Bob Casey and Erie Mayor Louis Tullio. It remains a life-threatening disease without a cure.

Shortly after the mayor’s death, the Richard S. Caliguiri Fund was established at The Pittsburgh Foundation in his honor as a funding pathway that would lead to a cure for amyloidosis. In 1992, a renamed Richard S. Caliguiri Great Race would provide one dollar from each runner’s entry fee for the fund, as well. This year, the fundraising mission took a giant leap with the announcement of an endowed chair under the mayor’s name at the University of Pittsburgh, a position created to attract a leading researcher to oversee one of the most intensive investigations of amyloidosis and other diseases that lead to heart failure. The idea for this co-creation project originated in the Foundation’s Center for Philanthropy, which pairs donors with community leaders and Foundation subject matter experts to develop groundbreaking initiatives.

The research program conceived by Dr. Mark Gladwin, chair of Pitt’s Department of Medicine, will be built from contributions eventually reaching $2 million from the Caliguiri Fund, the Simeon M. and Katherine Reed Jones Fund at the Foundation and the University of Pittsburgh Medical Center.

David Caliguiri was 15 years old when his father died.

He is 45 today, married, the father of three and founder of The Caliguiri Group, a public affairs and communications firm. David describes his father and their family’s efforts to fund amyloidosis research.

Growing up, my father was everywhere. He had so much energy, such an enthusiasm for life. It was a constant go. Part of that was that he loved his job and loved the City of Pittsburgh and the people of Pittsburgh. We saw amyloidosis take that away from him. That disease — we had never heard of it, couldn’t spell it and could barely pronounce it. But we got to know it pretty well — pretty quickly.

He slowed down. He wasn’t able to be as active. People would tell me my father would get dropped off at the side of the City County building so he would be able to take the elevator, so he didn’t have to go up the steps. It was hard to see that.

Shortly after my father died, my mother and folks who were close to my dad, some former staff members, got together and decided one of the best ways to remember him was to create an amyloidosis fund. The fund was created shortly after he passed. We raised money through golf
outings and from private donations.

In 1992, Sophie Masloff renamed the Great Race the Richard S. Caliguiri Great Race. One dollar from every application went to the amyloidosis fund. That is still the case today. We are still getting private donations from people who have been touched by amyloidosis in some way. And my mother still gets letters from people who’ve been dealing with the disease.

One of the things my mother knew about my dad was that everything had to be Pittsburgh based. So when we set up this fund to raise money for amyloidosis research, we knew we had to do it at a university [such as] the University of Pittsburgh. For many years, we tried to do that, but it was hard to find a researcher. We weren’t able to get a commitment from a researcher to devote the time necessary. Their work was intermittent.

In the beginning, it was about trying to create an awareness of amyloidosis. When my father was diagnosed in 1987, I think there were 5,000 known cases of amyloidosis. Then the mayor of Erie, Lou Tullio, was diagnosed. And then [Pennsylvania Gov.] Bob Casey.

But for a long time, it was just this rare disease that killed our father.

What we had were great partners in the City of Pittsburgh and the Great Race. I don’t know whether we would be where we are today without that support and the support of The Pittsburgh Foundation.It was through the Foundation that we met Dr. Mark Gladwin. He and his team have recently done studies on amyloidosis. They are great people, smart people, and they love what they do.

We met with them late last summer, and the timing was perfect in how all of our worlds came together. I believe in fate. I think it is what brought us all together. I think that’s a sign that we are on to something here.

A year later, we have an endowed chair at the University of Pittsburgh. And I don’t know of a better place to get this done. I have a little bit of a bias. I have a graduate degree from Pitt. But I know that having [the research happening] there is what my father would have wanted.

The endowed chair, first and foremost, is about research and ultimately finding a cure for amyloidosis. I think it is going to make a huge difference. I also think their work is going to open the door to new treatments for heart disease as well.

It’s a great time for this. We’ve been introduced to different doctors and researchers who say there is something about the amyloid protein — that it is not just related to my father’s disease, but to other diseases as well. We are now starting to realize that maybe it isn’t as rare as once thought — that maybe there have been many incidences in which amyloidosis has gone undetected in some people who passed away from heart disease. Now, more folks are being diagnosed, and doctors are able to find ways to prolong their lives.

For the first few years, raising awareness was all we did and all we talked about. You got into that routine. We weren’t finding researchers. Not much was getting done.

Suddenly, that’s changed with this chair. Now, we may be able to find a cure for amyloidosis. Doors will open to treatments for heart disease as well. Now, there is hope. My family has become re-energized by it.

Original story appeared in the Report to the Community 2016-17