ROCHESTER, N.Y. — One family wants to keep their father’s memory alive by helping others, and they’re working with cancer patients across the country to do so. 

Zach Johnson wants to bring new life into this house. It’s been empty for years, after the passing of Zach’s dad, Jeffrey. Jeffrey Johnson battled with chordoma for seven years. It’s an extremely rare cancer in the bones of the skull base and spine. It is diagnosed in just one in 1 million people worldwide every year.

What You Need To Know

  •  JSJ Strong is a nonproft helping chordoma patients

  •  Chordoma is a rare cancer found in the skull base and spine

  • It is diagnosed in just one in 1 million people worldwide every year

Now, Zach Johnson wants to keep his dad's memory alive by helping others. He’s starting a nonprofit, JSJ Strong. 

He's raising money to help families across the country as their loved ones deal with the diagnosis. 

“I want to be that person coming into their lives and say, 'I know you need help, you're going through something we went through,'" said Johnson. 

About 300 patients are diagnosed with chordoma each year in the United States. 

Because chordoma is so rare, many people travel to get treatment. 

Johnson and his family started a fund at Massachusetts General Hospital, where their dad received his treatments. Using that fund as the kickoff for JSJ Strong, Johnson hopes his work shows other families they don’t have to go through this alone.