ALS at 27: Mass. Baseball Player Strikes Back

May 31, 2012— -- Pete Frates, a 27-year-old baseball player from Beverly, Mass., was in the best shape of his life. But a wayward pitch to the wrist and the lingering weakness that followed marked the start of a tragic turn.

"There were no broken bones, so they started to look for nerve damage," Frates said.

Six months of tests would reveal something far worse than a damaged nerve. He discovered in March that he has ALS, a deadly neurological disease that usually strikes people in their 50s and 60s.

"The man upstairs, this is his plan for me," said Frates, whose sculpted muscles are destined to waste away, trapping him inside a paralyzed body.

ALS, better known as Lou Gehrig's disease after the Yankee slugger, kills the nerves that control movement, relentlessly robbing its victims of the ability to walk, speak, eat and even breathe. But Frates, a team captain his whole life, is ready to play ball.

"Instead of wasting energy on the negative, let's use the energy in a positive way," he said. "Let's raise some awareness; raise some funds."

About 30,000 Americans have amyotrophic lateral sclerosis, landing the condition in a category of rare and often underfunded "orphan" diseases. But experts say the number is deceiving because each new diagnosis is offset by someone's untimely death.

"One in 500 people will die from ALS," said Dr. Robert Brown, chair of the Department of Neurology at the University of Massachusetts Medical School in Worcester and president of the ALS Therapy Alliance. "And we call it an orphan disease?"

It is rare, however, to see ALS in someone as young as Frates, who is statistically unlikely to live past 32.

"The sense of tragedy looms even larger when someone is so young," said Brown, who has seen patients as young as 11. "The irony is that at a time when their muscles are wasting away, we see extraordinary courage and motivation, and what can only be called strength."

Frates hopes to use his youth and every ounce of energy to change the face of ALS, and convince the country a cure is worth fighting for.

"We need more funding at a federal level," he said, adding that the one treatment approved to slow disease progression offers some patients a few extra months, at most. "If that's all people with ALS have to lean on, it's unacceptable. We need to do more."

Frates' father, John Frates, said he can't think of a better person to rally resources for people with ALS, many of whom have been silenced by the disease.

"He's always been a leader; a captain," he said, his voice shaking. "It's just the guy he is. It's always about the team."

Frates has always been a driven athlete, playing baseball since he was 3.

"If he cried, we'd stop [playing]," John Frates said. "So he just never cried."

Frates was team captain for Boston College, and even tried out for the majors.

"That's the most challenging part of this," John Frates said. "Watching his body let him down. He played by the rules: no smoking, no drugs, always worked out."

But ALS doesn't discriminate. Indeed, some studies suggest that it might even disproportionately affect athletes.

"The concept that this disease could be overrepresented among athletes has been in the medical literature for a long time, and no one underscores that concept more than Lou Gehrig," neurologist Brown said. "But the interesting question is: Does athleticism set the stage for motor neuron degeneration, or does that same property that makes a person a great athlete also make them susceptible to the disease?"