JSJ STRONG CHORDOMA INCORPORATED

JSJ STRONG CHORDOMA INCORPORATED

JSJ Strong Chordoma Incorporated is a Canandaigua, New York-based nonprofit organization classified as an institutional investor (endowment/foundation) with $6.1 billion in assets under management. Founded in honor of Jeffrey Johnson by his son Zachary Johnson, the organization began as a fund at Massachusetts General Hospital and has grown into a nonprofit dedicated exclusively to supporting pediatric chordoma families nationwide. Its strategy centers on providing direct financial assistance—covering mortgages, utilities, travel, medical expenses, flights, hotels, and other essential living costs—so families can focus on treatment and recovery. The organization serves families and individuals diagnosed with pediatric chordoma, a rare notochordal sarcoma along the spine, with pediatric cases requiring highly specialized care often far from home. Programs include mortgage assistance, travel expense support, essential cost coverage, and wellness resources such as an optional 'Patient Playbook.' JSJ Strong also engages in advocacy, awareness, and community outreach, and in its first year raised significant funds and provided relief to families. Leadership includes Founder & CEO Zachary Johnson, Campaign Manager Mike Benson, Development Director Connor Molloy, and a Board of Directors chaired by Lon Sanford.