Though he battled glycogen storage disease, Mr. Miller lived life to the fullest, relatives said. He acquired many friends and inspired many more, graduated from college, held down jobs, traveled the country, went to performances of the Grateful Dead, and was an avid sports fan.

In 2002, the family mourned the loss of Mr. Miller's younger brother, Gregory, who had the same disease but who died of cancer at 32.

Mr. Miller, who with his brother underwent tests and treatments that doctors say benefited thousands of others with GSD, died April 24 of complications of the disease at Beth Israel Deaconess Medical Center. He was 40 and had lived in Newton.

"Except for having to follow a medical regimen from the time he was 15 or 16, Scott lived a very normal life," his father, Alan of Wellesley, said. "He was a remarkable person and very upbeat. He was an incredibly devoted and respectful son. Growing up, we never had a moment of unhappiness because of Scott."

At Children's Hospital Boston, where the Miller brothers were treated, doctors said the two played a key role in increasing survival rates for patients with GSD. The malady leaves the body unable to use stored-up sugar.

"These two boys really made a major contribution in defining that with continual infusions of glucose, both did very well," said Dr. John Crigler, who was chief of endocrinology at Children's and diagnosed the disease in the brothers.

The support of the Miller family was a major factor in their sons' treatment, he said.

Dr. David Weinstein, a specialist in the disease who practiced at Children's and who now directs the Glycogen Storage Disease Program at the University of Florida College of Medicine in Gainesville, said: "Thousands of children have benefited from Scott's experience and his willingness to take part in research. The treatment that was tried on the boys in 1971 changed this from a fatal disease to one that people can do well with. The advances made through studies on Scott and Greg really became the foundation for the care that is still used today."

Before those gains, Weinstein said, treatment was "radical surgery that bypassed sugar from being taken up by the liver." The Miller brothers had the surgery in 1971, but because of what doctors learned from treating the two before the procedure, the brothers and other children with GSO "began to be treated with continuous feeds of glucose-containing formulas that allowed them to survive without surgery," he said.

A therapy using corn starch was introduced in 1982, Weinstein said. The findings saved future sufferers "from being hooked up to feeding tubes all their lives" and from surgery, he said.

At Children's, Scott and Gregory were treated by two eminent doctors, Crigler, and the late Judah Folkman, who operated on Scott Miller when he was a year old. The involvement of Folkman, who would go on to be a world-renowned cancer researcher, did not end at the hospital. The Miller family still has the letter he wrote in 1988 to New Hampshire College in Manchester supporting Scott's application for admission.

In it, he told of "Scott's difficult struggle" with his illness that required many hospitalizations and about his "very fine family of devoted parents who have taught him how to manage on his own and have in every way supported him during his difficult early years of illness."

Folkman said Scott Miller and his brother were able to prevent symptoms of low blood sugar "by dietary control and by supplemental starch intake."

Both Scott and his brother graduated from college in 1992, Scott from New Hampshire College, and Gregory from Cornell University. Weinstein recalled how the boys' mother, Barbara, and father would phone their sons in the middle of the night while they were in college to remind them to take the scheduled dosage of cornstarch and water.

Mr. Miller was born and grew up in Wellesley. After graduating from Wellesley High School and college, Mr. Miller worked at various jobs. One of them was with the TAB newspaper group. His most recent job was with an Internet firm in Boston owned by his brother, Andrew of Newton. Andrew does not have the disease.

When Scott began to feel ill last fall, he sought help, his father said. But, in February, he traveled to Phoenix for the Super Bowl. His health worsened after returning home.

In his eulogy, Andrew recalled that "Scotty made it clear that if this day came he would want there to be Grateful Dead music and that it would be as upbeat as possible. I take some solace that Scott may have lived most people's 90 years."

Julie Bernstein Cotter of Danbury, Conn., a longtime friend who worked with Mr. Miller at the TAB, said: "Scott always thought that one day he would be better. Whenever he would hang up the phone with me, he'd always say in his trademark way, 'Cheers.' "

Alan Miller said an e-mail from one of Mr. Miller's friends described his son well: "He was thankful for what he did have and not bitter for what he did not."

Services have been held. A fund has been established in Mr. Miller's name at the University of Florida medical school for research into GSD.

Link: Boston.com