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Thursday, May 5, 2016

'Beat it'

Tuesday, August 10, 2010

(Photo)
Eight-year-old Benjamin Durcholz was diagnosed with Mucopolysaccharide III B, just before birth. Courtesy Photo.
* Walk/Run proceeds to help find cure for genetic disease

The "Beat it for Benny" Mucopolysaccharide (MPS) Walk/Run will take place Sept. 25, at Deming Park, Terre Haute.

This is the first year the event will take place in the Wabash Valley.

"The sponsors have been amazing," Emily Durcholz said. "We have a little more than $4,600 raised already. Our goal was to raise $5,000, but now we are shooting higher."

All money raised from the event will go toward research for a cure.

The event is named after Benjamin Durcholz, an 8-year-old, who has MPS III B, a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes.

"Ben was diagnosed before birth via amniocentesis," Emily said.

Typically, the body uses enzymes to break down and recycle materials in cells. In people with MPS and other related diseases, the missing -- or insufficient -- enzyme prevents the proper recycling process, resulting in the storage of materials in nearly all cells of the body.

As a result, cells do not function properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system.

The disease may not be apparent at birth, but signs and symptoms become apparent with age as more cells become damaged.

"He doesn't really know what is going on as far as the disorder goes," Emily said. "He doesn't know much different because part of the side effects of MPS III is mental retardation. The only thing he knows from the disorder is the pain."

An estimated 1-in-25,000 births in the United States will result in some form of MPS.

At the present time, there is no cure for the disease, but treatments and therapies are in the works. However, money is needed to continue to fund research to find a cure.

The National MPS Society is a nonprofit organization dedicated to improving the lives of children and families who are impacted by the genetic disease and to help fund research for a cure.

The MPS Society is hosting a series of 5K run/walk events across the country to raise awareness and funds for research.

There are three tiers of sponsorships for the Sept. 25 event, including Corporate Sponsored, Team Sponsorship and Donations of Merchandise, all costing varied amounts of money.

Registration for the event begins at 8:30 a.m. It is scheduled to begin at 10 a.m., and conclude at 1 p.m.

"Ben is going to be at the event," Emily said. "He loves parks, not to mention people."

Anyone interested in becoming a sponsor should contact Emily Durcholz at 4423 W. PR 860 N., Brazil, Ind., 47834, via e-mail at lildurcholz11@aol.com, or by calling 812-691-1456.

Cheerleaders from the Indianapolis Colts will be at the event in addition to the Dad's Root Beer Indy Race Car. Both organizations will be giving out free giveaways.

For more information on MPS, log on to www.mpssociety.org.



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