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  Musician creates not-for-profit research center for ALS and other "orphan diseases"
Posted February 28, 2003 in ALS News

Chris Hobler's effort to create a nonprofit research center here to zero in on ALS and other under-studied diseases is gathering steam.

An executive director has been hired, and a full-bore search is on for lab space in the fledgling biotech corridor between Washington University and St. Louis University.

Hobler, 37, a musician and member of the Maritz clan, was diagnosed two years ago with amyotrophic lateral sclerosis (Lou Gehrig's disease). His life's mission now is finding and funding aggressive research that could lead to a cure for ALS and other orphan diseases, relatively rare conditions that draw little research.

Last year he founded ALS Hope: The Chris Hobler/James Maritz Foundation. It has raised (and already given away) nearly $2 million for research, public awareness and legislative initiatives.

Now, it will spend some $400,000 to launch The National Center for Study of Orphan Diseases, said foundation Director Mike Schroeder.

The Hoblers also are committing up to $1 million in private funds to buy a building. A capital campaign to raise $5 million to $8 million is in the works.

The foundation has hired Shadi Farhangrazi, a scientist and MBA, as executive director. Until November, she was a research assistant professor in the neurology department at the Washington University School of Medicine.

The center will function as a bridge between academic research and commercial ventures, she said. "We believe some of the research could be spun off as for-profit. When we talk to people about gifts, we talk to them about making an investment."

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