Ride For Life

© 2006 by WNBC.com. All rights reserved.
POSTED: 3:36 pm EDT August 31, 2006
UPDATED: 3:56 pm EDT August 31, 2006

It's not often that you see an apparently healthy young woman using a scooter to get around, but Laura McWhorter finds herself relying on it more often lately.

McWhorter suffers from amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease. Little is known about the degenerative neurological illness that's invariably fatal; there's no cure and no treatment.

"My legs are very weak," said McWhorter. "I wear leg braces on both legs. I use a walker, a rolling walker, when I'm out and about. When I'm at work, I use that full time."

She said she notices her body quickly degenerating.

"The decline is relentless, actually," she said. "I notice just on a weekly basis that I'm not able to do things that I was a week ago."

ALS also took the life of Jennifer Estess. Her family, frustrated over how little was known about the disease, founded Project ALS, which led to the creation of a privately funded lab that works with the most controversial of biological materials -- human embryonic stem cells.

"It's born out of necessity because it seems un-American, in the eyes of Project ALS, to watch people die from brain disease when answers are among us in the form of stem cells," said Valerie Estess, Jennifer's sister.

The Bush administration's prohibition against federal funding for virtually all human embryonic stem cell research has led to private efforts similar to that of Project ALS.

The experiments have had encouraging results. Researchers have already discovered that mouse stem cells can be transformed into nerve cells and then connected with muscles. When transplanted into rats, these cells recover neurological function. Part of the same process has been replicated with human stem cells.

"It saddens me a little bit that in the U.S., we have to go through these private research foundations in order to get this kind of work done," said Laura Estess, also a sister of Jennifer.

One reason existing stem cell lines are not useful is that they're not derived from ALS patients, so researchers can't tell what goes wrong with ALS nerve cells.

McWhorter said she supports the Project ALS lab, even though she knows any advances will likely come too late to help her.