James Heywood, founder of an unusual Newton-based biotech, says he doesn't answer to shareholders.

He answers to patients who have just a few years to live.

His company - actually a nonprofit organization funded completely by donations - is dedicated to finding a cure for Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's disease.

Unlike other groups that raise money for specific diseases, the 4-year-old ALS Therapy Development Foundation hires its own researchers. They test drugs already under development or in use for other diseases to see if they will work against ALS.

"An effective cure for ALS might be sitting on the shelves today," said Chris Pazoles, the foundation's chief operating officer.

The company has already discovered two possible treatments and is getting ready to do human trials with them.

The work began when Heywood's younger brother, Stephen, was diagnosed with the debilitating disease. The neurological disorder leads to muscle atrophy, paralysis and eventual death due to respiratory failure or choking.

About 30,000 Americans suffer from the disease, with about 8,000 deaths every year. The only approved treatment extends life for an estimated three months, Heywood said.

Heywood, a businessman who has been starting companies since he was 16, was frustrated with the lack of options and information. He said he found there was good basic research on the disease but no mechanism to turn that work into treatments.

In addition, there was no central clearinghouse for information on the disease and potential treatments.

Heywood gathered his entrepreneurial determination, left his job and started raising money.

It took two years to get enough to open a laboratory. The foundation now has about 42 employees - half of them researchers and the other half working in administration.

With headquarters in Newton and research space in Cambridge, the foundation is looking for a place where the two can be brought together in one building.

The foundation partners with companies that donate their drugs for the research in exchange for expertise in ALS. Because the foundation doesn't need to license the drug, it can make arrangements with companies within a few weeks rather than months.

Companies generally aren't interested in looking for treatments and cures for ALS because the research is too expensive compared with what they could make even on a successful product, Pazoles said. But the foundation eases the burden by doing the early-stage work.

The foundation also collects information and shares what it learns as the work moves along.

"As we do the research, we want to promote emerging therapies to patients and their doctors," Pazoles said. "Our mission is to bring things to the attention of patients and their doctors early in the process so they can make decisions about treatments."

Information about the trials is open to companies as well as patients on a real-time basis.

"You can look at this data from anywhere in the world," said Ramesh Tenmore, chief scientific officer. "You can see how the test is going and you can piggyback onto it."

While the work goes on, Heywood and his colleagues are well aware that patients are waiting.

Heywood's brother married a woman he was dating when he was diagnosed with the disease. They have a little boy named Alex. Stephen Heywood still works, but his condition is getting worse.

"You mourn every day because you lose something continually," Heywood said. "What's important is how you approach it. If despair turns inward, it can destroy you. If despair turns into action, you can make a difference."

ALS Therapy Development Foundation: www.als.net