A Poets Legacy Turns To Hope Through Hazlet Resident

At 5- and 2-years-old, respectively, Hazlet resident Mark Manginelli and his brother, Michael, had barely scratched the surface of carefree youth when they received identical diagnoses: Cystic Fibrosis—an inherited, chronic disease affecting the lungs and digestive system. The year was 1990, and the life expectancy was 18-years-old.

The disease quickly consumed their childhoods, and practicing breathing treatments two or three times each day became a routine activity, as did taking enzyme pills before every meal. Additional obstacles faced the boys at school, where the prospect of taking medication in front of their classmates during lunchtime made them very self-conscious, fearful of being judged by their peers. However, it was not the students, but their parents who made the brothers feel insecure. According to Mark Manginelli, “parents would ignorantly approach our mother and ask, ‘Why are your children popping pills in school next to my children? What do they have, AIDS?’ Since those days, we learned that no matter what life throws your way and as ugly as it may be, we will always prevail.”

And, despite the mental and physical challenges of growing up with Cystic Fibrosis, Manginelli did prevail. “I never let my condition get in the way of anything I wanted to do. I made sure that I excelled in school and sports because of it, but thankfully my support system of loving family and friends helped make it easier,” he said.

Manginelli has come a long way since his days in the schoolyard, defying all odds and the short life expectancy given to him 23 years ago. He has a successful career in financial advising and consulting at Fountainhead Capital Management in Edison, N.J., and has channeled his experiences with Cystic Fibrosis towards the greater good as an active member of the Cystic Fibrosis Foundation and the Cystic Fibrosis Center at Monmouth Medical Center. More recently, however, Manginelli fulfilled a life-long goal and founded his own foundation for Cystic Fibrosis: BREATHE, The Morgan Lucas Schuldt Foundation for Cystic Fibrosis.

BREATHE—which is an acronym for Bringing Relief Everyday Against Troublesome Health Expenses—strives to provide financial assistance to New Jersey’s children and adults living with Cystic Fibrosis so that they can pursue advanced degrees. Until recently, those living with Cystic Fibrosis had an adolescent life expectancy, therefore preventing participation in higher education. Although people with the disease are now leading longer lives, the prospect of a college education is still often not considered. Furthermore, the high medical expenses associated with Cystic Fibrosis make saving for college nearly impossible for many families. With this in mind, it is Manginelli’s mission for BREATHE to make higher education a reality through means of scholarships.

“Our main hope is that we can help families with Cystic Fibrosis all over the country and have a BREATHE chapter in every state. We have a goal to raise at least $100,000 our first year, but with our experience in fundraising and our amazing network of sponsorships, we should have no problem exceeding that,” said Manginelli.

In addition to providing those with Cystic Fibrosis the opportunity to pursue advanced degrees, BREATHE aims to honor the life of Morgan Lucas Schuldt, a poet, publisher, editor, teacher and writer who passed away from Cystic Fibrosis complications following two lunch transplants on January 30, 2012 at the age of 33. Schuldt was also the son of BREATHE co-founders Murray G. Dychtwald and Barbara Schuldt.

“It was immediately after meeting Murray and Barbara when we came together and had the same exact vision of what we knew had to be done…there’s a drastic gap that needs to be filled today, medications that need to be filled to be filled today, double lung transplants that need to be done today and even bills that need to be paid today,” said Manginelli. “By the grace of God, we’ll soon be able to make those things possible for families that may otherwise have no other place to turn.”

A taxing journey lies ahead of Manginelli and his young foundation. However, just as he persevered through the trials of learning to live with Cystic Fibrosis, he is prepared to fervently persist once again, this time for those who share his story. “To honor Morgan and keep his legacy alive, along with every other friend we have lost to Cystic Fibrosis, is the reason we do what we do,” said Manginelli. “We may not have a cure yet, but if we can make it easier for these families until then, that is our passion.”