General wins key campaign

House passes bill to start ALS database

In the four years since he was diagnosed with Lou Gehrig's disease, retired Air Force Brig. Gen. Tom Mikolajcik has pushed Congress to fund more research of the mysterious neuro-degenerative disease that eventually kills anyone diagnosed with it.

On Wednesday, the U.S. House passed legislation to set up a national ALS database to collect information on the disease for scientists and patients.

"We're halfway there," said Mikolajcik, who has been to Congress three times to fight for ALS research and testified before a congressional committee in July.

"Now I hope the Senate will follow suit. Hopefully, the House passage will force the issue."

The legislation, approved unanimously by the House, calls for the Centers for Disease Control and Prevention in Atlanta to create a national registry to compile information about Amyotrophic Lateral Sclerosis, a disease that causes people to lose the use of their limbs over a period of years.

"This important legislation will provide scientists and ALS patients alike more insight into this terrible disease," said U.S. Rep. Henry Brown, R-S.C., a co-sponsor of the measure and the general's friend. "I have seen firsthand the devastating effects of this disease, and it is my hope that one day no one will ever have to suffer from ALS."

Every year, about 5,600 Americans are diagnosed with ALS. Most of them die within five years, although a small percentage survive 10 years. It's unclear exactly what causes the disease, which is not contagious, but it strikes military veterans at about twice the rate of the general population.

The disease was first discovered in 1869. In 1939, Lou Gehrig was diagnosed with the disease, and it's been commonly referred to as his disease ever since.

The most tragic thing, Mikolajcik said, is that in all that time, we have learned little about the disease.

"To really be able to get good research information, we need a good database about ALS," he said.

Mikolajcik, a former commander of the Charleston Air Force Base, said the government needs to coordinate ALS research efforts, figure out who's in charge and put together a plan to study the disease. And they need to fund it.

The next hurdle comes in getting the Senate to approve similar legislation, which in theory shouldn't be tough: the Senate companion bill has more than 50 co-sponsors, a majority of the chamber. Mikolajcik said Wednesday he believed South Carolina's congressional delegation will push the issue.

"I couldn't be more pleased about our state's representatives for their support of this effort," he said.

Reach Brian Hicks at 937-5561 or bhicks@postandcourier.com.