When Alok Malhotra thinks of his friend Jack Dowd, he remembers a grinning second-grader waving to him on the first day of school many years ago. The moment marked the start of a close friendship between the boys that endured even when they attended different high schools in their hometown of Holmdel, N.J. And it’s an image that flashed in Malhotra’s mind when he answered his phone on September 17, 2017, and learned from a mutual friend that Dowd had died.
“I’ll never forget every little detail of that night,” Malhotra says. Dowd, a standout varsity lacrosse player for Holmdel High School, collapsed during a scrimmage at Rutgers University and could not be revived. Doctors later discovered Dowd had Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C), a genetic heart condition that causes abnormal cardiac rhythms and progressive scarring of the heart muscle. Although rare — ARVD/C affects approximately 1 in 5,000 Americans — it’s a leading cause of cardiac death in athletes under age 35.
Shock gave way to sorrow, then resolve in Dowd’s community. With the support of Dowd’s family, Malhotra and two other friends, Jess D’Agostino and Arun Movva, planned and hosted Dash4Dowd, a 5K and fun-run in Jack’s honor in September 2018. The event drew about 600 participants and raised more than $30,000, which Malhotra and his friends donated to Johns Hopkins’ ARVD/C Program, part of the Heart and Vascular Institute.
“I read so much [about ARVD/C]” after Dowd’s death, Malhotra says. “I was looking for the best places for research programs, and Hopkins came up.”
The program — considered one of the most comprehensive in the world — marked its 20th anniversary in May 2019. Its clinicians and genetic counselors help families determine their predisposition for the disease and manage their lives successfully after a diagnosis.
Crucial to that effort, says program director Hugh Calkins, has been research. Among the more than 170 papers published by individuals associated with the Hopkins ARVD/C Program was a 2013 study that offered the first conclusive link between intense or endurance exercise and progression of the disease. The program has developed an online calculator into which physicians can plug in several variables — such as episodes of brief, abnormally fast heartbeats (non-sustained ventricular tachycardia) or extra heartbeats that begin in the lower ventricles of the heart (premature ventricular contractions) — to estimate an individual’s risk for sudden cardiac death. And the National Institutes of Health recently awarded the program a grant to continue honing a non-surgical method to disable the cardiac nervous system. It’s an intervention that can reduce the kind of exertion that puts ARVD/C patients like Dowd at risk for sudden cardiac death.
“We know that, among the autopsies we’ve seen in our program, more than half of the individuals who died suddenly had prior symptoms. If just one person hears about these symptoms at an event and thinks ‘Hey, I’ve had that,’ then gets evaluated, we can prevent a sudden death.”
Brittney Murray Genetic counselor, Johns Hopkins Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy Program
Diseases like ARVD/C, however, don’t typically attract those kinds of large grants.
“It’s not one of these big flashy diseases that gets a lot of national attention,” says Brittney Murray, a genetic counselor in the Hopkins ARVD/C Program. “We really rely on people who are personally motivated by this condition to help fund our work.”
The program was established two decades ago through a philanthropic gift, Calkins says, and “what has sustained our program for 20 years has largely been donations. Many are (gifts of) $500 or $1,000 — money raised through fun runs and bake sales.”
In addition to the funds, Calkins and his colleagues value the awareness these kinds of events raise about ARVD/C in communities.
“We know that, among the autopsies we’ve seen in our program, more than half of the individuals who died suddenly had prior symptoms,” Murray says. Those warning signs include dizziness, rapid heart rate or palpitations, or passing out during exercise. “If just one person hears about these symptoms at an event and thinks ‘Hey, I’ve had that,’ then gets evaluated, we can prevent a sudden death.”
Malhotra isn’t sure whether Dash4Dowd will return in fall 2019, as he’ll be starting his first year at the University of Michigan in August. But he has all intentions to continue supporting efforts to advance knowledge of — and someday, a cure for — the disease in his friend’s honor.
“Anything I can do to help this cause means the world to me,” he says. “I think Jack would be proud of us for what we’re doing.”
Interested in supporting research about rare but lethal diseases like ARVD/C?
Topics: Friends of Johns Hopkins Medicine, Heart and Vascular Institute, Fuel Discovery, Promote and Protect Health