John Campanella grew up hearing how his father, an original Baltimore Colt who went on to become the team's general manager, collapsed in 1967 while playing handball at an athletic club on Howard Street.
Dead by the time he hit the floor, Joe Campanella was the apparent victim of a heart attack. It was an assumption that stood until his daughter, Carrie Campanella Becker, died just as suddenly - and, at 36, just as young - after riding a horse on the family farm in Churchville.
Her death from a rare illness that can trigger a dangerously rapid heartbeat was enough to scare John Campanella into getting evaluated. When he learned that he suffered from the same illness that had claimed his sister and presumably his father, Campanella and his wife, Kathy, decided they had seen enough.
"I really thought I was going to die," said Campanella, 35, a former high school and college lacrosse player. "But we started to wonder what we could do. We felt we just couldn't step back and let this happen."
Now, the Campanellas are the engine behind an effort at the Johns Hopkins School of Medicine to unravel the mysteries behind a disorder, known as ARVD (for arrhythmogenic right ventricular dysplasia), that strikes the young and vigorous.
"This disease seems to selectively affect people who are athletic and living life to the fullest," said Dr. Hugh Calkins, who heads ARVD research at Hopkins. "This disease seems to pick out the winners."
In the past four years, the Campanellas have raised $2 million for research. They have also established a Web site that has helped draw patients from around the world - including siblings and children of athletes who collapsed - to Hopkins for evaluation and treatment. Hopkins recently joined eight centers in a $7.5 million federal study to develop therapies for the disease and pinpoint the responsible gene.
The illness, which affects 1 out of 5,000 people, occurs when portions of the heart's right chamber are replaced by bands of fat that can disrupt the electric signals that trigger the heart's contractions.
Why athletes are at highest risk is not clear. One possible reason is that vigorous exercise causes the heart to beat faster. And in people who are genetically susceptible, this can tip the heart into the ultra-fast rhythm known as tachycardia. Symptoms usually start after puberty but before a person reaches 45 years of age, Calkins said.
About 500 young athletes die suddenly each year of heart-related causes, according to Dr. Barry Maron, an expert in the phenomenon at the Minneapolis Heart Institute Foundations. Accounting for a third of the fatalities is a condition called hypertrophic cardiomyopathy, which has been blamed for the deaths of many high school and college athletes.
ARVD accounts for about 5 percent of sudden deaths among young athletes in the United States. In Italy and Nova Scotia, however, it is much more common, pointing to a strong genetic component.
For many, the disease is mild, producing occasional fluttering in the chest. Others experience fainting spells and shortness of breath while exercising. Treatment includes beta blockers, to regulate heartbeat, and electronic implants called defibrillators that can sense trouble and shock the heart into its normal rhythm.
Calkins says there is much that doctors don't understand.
"Who needs to get a defibrillator?" Calkins said. "We don't know. Does exercise make it progress more rapidly? We don't know."
Doctors don't yet have a genetic test to identify family members who are at risk.
Sadly, it took two deaths in John Campanella's family to raise his suspicions.
His father was a lineman for the Baltimore Colts during the early 1950s. Later, he started the Gino's hamburger chain with his former Colt teammates Alan Ameche and Gino Marchetti, and a former Ohio State teammate, Louis Fischer. He launched the Rustler Steak House chain before rejoining the Colts in the mid-1960s to become general manager.
"He was just a wonderful human being, one of my closest friends," said Don Shula, who was hired by Campanella to coach the team. There were no obvious warning signs that Campanella was seriously ill, Shula said. But looking back, he cannot help but think that his friend was in trouble when, on a few occasions, he became short of breath.
Then, on a winter's day in 1967, Campanella was playing handball with Shula and two other friends when he staggered and said, "I've got to stop."
"The next thing all of us knew he just fell down flat on his face," Shula said. Another player on the court tried to breathe life into Campanella but to no avail.
John Campanella, born a few months after his father died, grew up one of seven children in Glen Arm. His older sister, Carrie, pursued her love of horses as a riding instructor at the family's equestrian center in Churchville.
