About Us
Bringing love and hope to the families who need it most.
advocacy
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awareness
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support
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community
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advocacy · awareness · support · community ·
Our Story
JSJ Strong was founded in honor of Jeffrey Johnson—a loving father, talented painter, and man who brought joy to everyone he met. His son, Zachary Johnson, saw first hand the toll Chordoma took on his father and their family.
What began as a fund at Massachusetts General Hospital has grown into a nonprofit dedicated exclusively to pediatric chordoma families nationwide.
What is Chordoma?
Chordoma is a rare, slow-growing cancer (notochordal sarcoma) that forms along the spine—from the skull base to the tailbone. With treatment, many patients live for a decade or more, but the journey is complex, costly, and emotionally taxing—especially for children and their families.
Key Facts:
Rarity: ~1 in 1 million people diagnosed each year
USA: ~300 new cases annually
Europe: ~700 new cases annually
Pediatric cases are even more rare and require highly specialized care, often far from home.
Our Mission
JSJ Strong is committed to perpetual growth as a nonprofit—continuously striving to increase our impact. We focus on providing specialized support services for pediatric chordoma patients and their families, addressing both financial and emotional needs.
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Families and individuals diagnosed with pediatric chordoma.
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Battling a rare cancer like chordoma is financially devastating. Families face:
Medical and clinical trial costs
Daily care expenses
Travel costs for specialized care
Accommodation, flights, and transportation fees
These burdens pull focus away from treatment and recovery. JSJ Strong exists to ease that burden.
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Direct Financial Assistance – Covering mortgages, utilities, travel, and medical expenses.
Personalized Support – Assessing each family’s needs and addressing them directly.
Wellness Resources – Offering an optional “Patient Playbook” to support health and well-being during treatment.
Our Impact
In our first year, the generosity of donors, sponsors, and volunteers allowed us to:
2. Provide essential relief to families like Ryder’s, covering urgent expenses during their toughest battles.
1. Raise significant funds to assist chordoma families.
3. Increase awareness about chordoma through events and outreach.
Our Programs
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Covering monthly payments during treatment to keep families in their homes.
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Funding flights, hotels, and transportation so children can receive specialized care.
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Covering bills and living expenses so families can focus fully on recovery.
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Offering an optional “Patient Playbook” to support overall physical and emotional health.
Our Team
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Zachary Johnson
FOUNDER & CEO
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Mike Benson
CAMPAIGN MANAGER
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Connor Molloy
DEVELOPMENT DIRECTOR
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Lon Sanford
JSJ Strong Board Chair; Retired Law Enforcement, Current Town Justice
Pete Kennedy
JSJ Strong Board Vice Chair; Business Development Manager of D2 Media
Brent Bridgman
JSJ Strong Board Secretary and Treasurer
Ed Mulheron
Retired Educator and Coach
Mel Pierce
Retired Educator and Coach
Debbie Pontera
Owner and Managing Partner D2 Media Team
Mark MacNeil
Retired Educator and Coach
Deven York
Canandaigua City School District Educator and Head Men’s Lacrosse Coach
Kathy Herrick
Commercial Valve Product Manager at G.W. Lisk