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Updated 4:14 PM May 14, 2009
 

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Schoeni serves as rallying point for local ALS fight

Nearly a year after being diagnosed with Lou Gehrig's disease, Bob Schoeni is delighted that he'll be dancing with his wife, Gretchen Spreitzer, at a square dance Friday at the Washtenaw County Farm Council Grounds.
Bob Schoeni participates in a November 2008 Family Field Day at Burns Park in Ann Arbor. The event, sponsored by A2A3, drew more than 350 children and adults for games and sports clinics. It raised $7,000 for ALS research. (Photo courtesy Bob Schoeni)

The family-friendly dance, which starts at 6:30 p.m., is the latest in a series of town-gown activities to raise money for research in the fight against amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

A progressive neuromuscular disease that attacks the cells that control muscles, it affects the ability to move, speak, swallow and breathe. Through it all, the mind remains fully aware. It's a condition that has no cure and as yet, no effective treatments. Many patients are in wheelchairs within a few years of diagnosis, and most die within five years.

Schoeni, 45, is an internationally recognized economist with appointments in the Institute for Social Research (ISR), LSA, and the Gerald R. Ford School of Public Policy. But he is known as "Coach Bob" to the girls who play field hockey, soccer and other sports in with his daughters, Maddie and Sophie, in Ann Arbor Rec & Ed.

He and Spreitzer, a professor at the Stephen M. Ross School of Business, also are involved in their church, their Burns Park neighborhood, and their daughters' schools. So it's not surprising that the community — within the university and outside it — is rallying to their support.

The square dance fundraiser is co-sponsored by a group that just received its official nonprofit status — Ann Arbor Active Against ALS (A2A3). Started by Schoeni family friends and admirers, the group's board includes current and former U-M students and faculty members, as well as community leaders.

"Because coaching sports means so much to Bob, and because ALS takes away activity and muscles, A2A3 aims to help fight the disease by doing the opposite of what ALS does — encouraging people to be active and strong," says ISR colleague and A2A3 board member Kate McGonagle.

Schoeni first noticed symptoms of ALS last spring while on a sabbatical in Australia with his family. A blog the family started to keep family and friends posted on their adventures down under — bschoeni.blogspot.com — has become a way to keep people posted on how the family is doing.

In the Sept.30 entry, Schoeni wrote: "Moving ahead, Gretchen and I think we have two options: 1) Be mad and angry, and let the disease win by stealing our spirit and soul; or 2) Refuse to let our mind and spirit be destroyed by this disease, and live every second to its fullest.

"Life is a gift. We each choose what to do with our gift. Our family has moments when we struggle, and we probably have many very difficult challenges ahead. But we are going to do our best to choose option 2."

To help the fight against ALS, go to www.A2A3.org.

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