Local man hopes to see his dream come true in national ALS database
 

Local man hopes to see his dream come true in national ALS database
Posted by Steve Doyle September 30, 2008 6:56 PM
Categories: Medical

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Eric Obermann works with his parents, Stuart and Marcia, on a speech he gave to a U.S. Senate committee in 2005. Eric, 27, has been traveling to Washington D.C. for years to promote ALS research.The diseased muscles around his mouth stopped working long ago, but Eric Obermann is smiling inside.

Congress recently approved the creation of a national registry to gather detailed information on the south Huntsville man and thousands of others living with ALS, or Lou Gehrig's disease.

Obermann, 27, who is paralyzed and hooked to a breathing machine, testified before a U.S. Senate subcommittee in May 2005 about the need for such a database. He has returned to Washington every year since to help nudge the idea along.

The Senate unanimously approved the bill last week, and it sailed through the House by a vote of 415-2. President Bush is expected to sign it into law in the coming days.

"Eric is very excited," his father, Stuart Obermann, said Tuesday. "He's been involved in this almost from the get-go. His mission was really to serve as a voice for other ALS patients."

Learn more about the database and its potential benefits in tomorrow's Huntsville Times.

Local ALS patient worked to help create national registry
Wednesday, October 01, 2008
By STEVE DOYLE
Times Staff Writer steve.doyle@htimes.com
Congress passed database bill; Bush expected to sign

The diseased muscles around his mouth stopped working long ago, but Eric Obermann is smiling inside.

Congress recently approved the creation of a national registry to gather detailed information on the south Huntsville man and thousands of others living with ALS, or Lou Gehrig's disease.

Obermann, 27, who is paralyzed and hooked to a breathing machine, testified before a U.S. Senate subcommittee in May 2005 about the need for such a database. He has returned to Washington every year since to help nudge the idea along.

The Senate unanimously approved the bill last week, and it sailed through the House by a vote of 415-2. President Bush is expected to sign it into law in the coming days.

"Eric is very excited," his father, Stuart Obermann, said Tuesday. "He's been involved in this almost from the get-go. His mission was really to serve as a voice for other ALS patients."

The Grissom High graduate has been living with the fatal neuromuscular disorder for six years. Unable to talk or move, he communicates with his eyes. He gave his Senate testimony using a talking computer.

The ALS Association estimates seven out of every 100,000 Americans - about 30,000 total - have the disease at any given time.

Stuart Obermann, who is president of the state's ALS Association chapter, said he strongly suspects the new database will reveal many more people living with the disorder than previously thought. The registry will also aid the search for possible environmental causes by tracking where patients live and where they worked before getting sick, he said.

"Everybody has a theory about it being some environmental factor," Obermann said, "but without very tangible scientific data, there's no way to prove that."

Congress previously earmarked about $5 million to set up pilot ALS databases in North Carolina, South Carolina and Minnesota; supporters are hoping to see that amount doubled next year.

The registry will likely be overseen by the National Institutes of Health or Centers for Disease Control and Prevention.

Obermann said hundreds of ALS patients have traveled to the nation's capital since 2005 to press for creation of the database. Among them are New Market resident George Orlich, Mike Eberhart of Fort Payne and the late Darin Kruse of Huntsville.

"It just shows that a group of well-organized individuals can really influence legislation with very little money," Obermann said. "I wish we didn't have to go back (to Washington), but there are still battles to be won."



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