Salberg first knew she had a heart condition in the seventh grade when she lined up to be routinely evaluated for her hearing and scoliosis.
"I get up to the front and a [doctor] sitting on a stool stops and looks up at me with horror on his face," she said. "He told the nurse to clear the room, and all the girls stood back. He had me squat and stand and says, 'Listen to this.' Immediately the nurse told me to sit down and call my mother."
The doctor had detected an abnormal heart murmur. In only 25 percent of all cases of HCM such a murmur will be present.
Soon, a cardiologist diagnosed her with the same disease as her brother and sister. He didn't give her much hope, telling Salberg, "I could die any moment -- though I looked fine."
At the time, "there was nothing out there to save me," she said. "I wasn't given any treatment."
Salberg ignored symptoms such as chest pain and dizziness.
"On at least two occasions I nearly passed out," she said. "And I didn't mention it to anyone at the time, because it wasn't as important as going on Saturday afternoons to the roller rink.... I have no idea how I was lucky enough to survive."
At the age of 21, she had a "full-blown stroke," and today has residual paralysis." Soon, her sister's health also declined with increasing arrhythmias.
"[Laurie] spiraled out of control and we were told she was in heart failure," said Salberg, who at the time was eight months pregnant with her daughter. "I promised to take care of her two kids."
"Standing next to Laurie's bed, watching her struggle for breath, I wondered if the baby I was carrying was also affected," said Salberg. "I thought, 'I can't die now -- I am too busy to die.'"
After suffering heart failure herself after the birth of her son, Salberg began to search the Internet, "looking for answers."
In 1996, she founded the HCMA. Since then, Salberg has worked with more than 5,000 families, "from birth to 95," and in 45 countries.
"We've saved thousands of lives helping people get identified and are now working on legislative approaches."
The association offers a tool to determine who in the family might have HCM and how to assess for risk of sudden cardiac arrest.
"Our knowledge changes day by day, and you have to maintain follow-up and be educated," Salberg said. "The patient needs to know the risks over time."
Today, Salberg, her daughter and her nephew all wear an implantable cardioverter defibrillator (ICD) that can shock a failing heart back to life. They are also on medication.
Salberg testified for a 2007 task force report in which three of the nine recommendations were turned into legislation called "Janet's Law," which was signed into law in September. It requires that every New Jersey school, public and private, be equipped with an AED. Schools must also establish emergency action plans for responding to sudden cardiac arrest events and training for school officials and coaches on how to operate AEDs.
The new law was named for Janet Zilinski, an 11 year-old who collapsed and died of sudden cardiac arrest in 2006.
Salberg is still pushing for drills to educate students and school responders. "We are not prepared for cardiac arrest when it happens," she said. "It's the most common way to die, and we don't drill for it. ...We have fire drills and armed invader drills. You are far more likely to have a child die in a school from sudden cardiac arrest than from a bullet or fire."
Salberg recommends that insurance pay for routine pre-certification physicals for athletes that are typically done today in schools, but not for universal testing specifically for HCM. She agrees with the medical experts.
"There is a lot of talk about athletes and sudden death and it's a complete and utter myth to go down that path," she said. "Eighty percent of the kids we lose under 24 are non-athletes. It's no panacea and even if you screen all high school students, there are false positives and false negatives.
"You are taking the resources away from those who need it, giving it to those who don't."