NATIONAL - ALS, better known as Lou Gehrig's Disease, is a killer disease that often is too far along to be treated once it's diagnosed. Researchers are trying to track down the roots of the disease.
Martha Bogosian lost her mother to Amyotrophic Lateral Sclerosis, ALS.
Bogosian says, "From the time she was diagnosed, which took nine months, to the time she died - that includes that nine months - was a year-and-a-half."
By the time diagnosis is made, there's not much that can be done.
Dr. Michael Benatar says "the disease process may be too far advanced that you don't stand a chance."
So researchers are now focusing on finding those at risk.
Dr. Benatar says, "If you know who's at risk, you might initiate a treatment in advance of the disease becoming apparent in advance the disease developing and perhaps a greater chance of preventing or delaying the onset of disease."
Researchers have long known ALS has two variations, including one that runs in families. Past research shows those cases share a specific gene.
Dr. Benatar says, "We know that they're at a high lifetime risk of developing disease."
The doctor and his team are now recruiting for their study looking at the familial ALS.
"We're talking to people who come from families where there are at least two family members who are affected with ALS. We're asking them to send us a genetic sample. We ship them a little kit and they give us a saliva sample from which we extract dna and test for the known mutations."
Martha hopes they get their answers soon.
"Knowledge is power," she says.
And with power may come treatments that could, one day, help patients with this often devastating diagnosis.
If you think your family carries the disease and you are interested in helping with the research, call 1-888-413-9315.