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ALS lab still in the hunt
Researchers find inspiration in death of founder's brother to continue searching for the elusive cure
BY JAMIE TALAN
Newsday Staff Writer

December 11, 2006

There is a mournful silence at the ALS Therapy Development Foundation, but that won't last for long.

A week after Stephen Heywood died after an eight-year battle with amyotrophic lateral sclerosis, a team of scientists from the organization, started by Heywood's brother Jamie, were off to Japan for an international ALS meeting.





And back at the lab, a skeleton crew took care of hundreds of caged mice bred to develop the fatal motor neuron disease and provide possible clues toward treatments. The foundation that began out of the Heywood family basement is now an impressive research laboratory in the heart of Cambridge, Mass. Jamie Heywood said he is committed to finding a treatment for ALS, "and carrying on Stephen's legacy."

Jamie Heywood ended a career in technology development to devote himself to caring for his brother and creating a foundation dedicated to finding a cure for ALS. The brothers' efforts are the subject of the bestselling book, "My Brother's Keeper," by Jonathan Weiner.

More than 700 people crammed into Grace Church in Newton, Mass., on the Sunday before last for a celebration of Stephen Heywood's life. He was 37 and left behind a 6-year-old son, a wife, two brothers and parents.

"I am not thinking anything different than I was last week," said Jamie Heywood after the service. "This foundation is bigger than Stephen."

He said his brother had been at the lab for a Thanksgiving celebration a week before he died. The disease had wiped out his ability to move and speak. But he was playfully moving about in his wheelchair, which he operated with his jaw.

After the funeral, life at ALS Therapy Development Foundation will be marked as A.S. - for After Stephen, Heywood said. "He will remain a tremendous inspiration. We have a lot of work to do."

It's been a trend for relatives of people with diseases to start foundations to raise money for research and education. But ALS-TDF is different.

"It's about seeing a better way of doing things," said Tim Andrews, who runs the foundation with Heywood and research director Sean Scott. It looks more like a small biotech company - with expensive animals, high-resolution microscopes, an impressive state-of-the-art laboratory, an animal surgical suite and an array of unnamed drugs that they are blindly testing to see whether they work to prolong the life of these ALS mice.

Most of the efforts of the 30 scientists have gone into proving the worth of virtually every possible experimental drug for ALS.

"How much can you learn from all the things that don't work?" asked Heywood. "A lot. That drives our research. It tells us where we need to go."

"We've tested 22,000 mice, far more than any individual laboratory has for ALS, and it is raising the bar on drug research," Andrews said. "We want to cure ALS. To do that, we need to understand the landscape."

It costs about $1,000 to buy, care for and test each mouse. But, Heywood explained, the foundation scientists discovered there is a high false positive rate when small numbers of animals are tested.

They have tested dozens of drugs. "Nothing works," Heywood said. "That's the depressing part. It makes you question whether the field really understands what is going on in this disease."

They are now testing experimental drugs for almost a dozen pharmaceutical companies.

"The question always was: What should I put in Stephen?" his brother said. "We treated him with medicines for two years that didn't work. How long are we going to continue to work on pathways that we know don't work? It is time for a new direction."
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