Sadly, I never had the honor of meeting PJ Nicholoff, but I’ve met his parents. And if PJ was anything like his father, Brian, he was vibrant, compassionate, caring, engaged and tenacious!
If you remember, PJ was a 31-year-old young man with Duchenne who, while vacationing in Florida, sustained a fractured leg and hip. Unfortunately, PJ had several complications following the fractures and died. His family discovered later that, while the hospital had taken care of all of his acute needs, that his daily steroids had not been given. While PJ’s death may have been attributed to many factors, his lack of stress steroid doses and daily steroids may have been a contributing factor.
PJ’s dad, Brian, could have taken several paths after his son’s death. Fortunately, for the PPMD community, he chose the path of service and caring.
The PJ Nicholoff Steroid Protocol
Brian initiated an effort to develop a resource that would help ensure that no other people living with Duchenne would have their steroid stress doses or their daily steroid doses forgotten. The result of his effort was the creation of the “PJ Nicholoff Steroid Protocol.”
We are very pleased to now announce that the development of this protocol has now been published in PLOS Currents Muscular Dystrophy. It is our hope that this publication will make it into the reference library of every Duchenne and emergency room provider. Our community deserves this care.
No, I did not know PJ, but I know Brian. And I think PJ would be very proud.