Transforming Lives
We are dedicated to bringing love and hope to the families who need it most.
Given the rarity of Chordoma cancer, individuals and their families often struggle to find the support they desperately need. This sense of isolation can lead to overwhelming feelings of hopelessness. At JSJ Strong, we are dedicated to changing this narrative by instilling a sense of hope worldwide.
We understand the profound impact that a lack of support can have on individuals and their families facing Chordoma. Through our efforts, we seek to provide not only financial assistance but also emotional support and a sense of community. By spreading awareness and fostering connections, we aim to restore hope in the hearts of those affected by Chordoma, regardless of where they are in the world. Together, we can make a meaningful difference and bring renewed hope to individuals and families impacted by this rare cancer.
Our Organization
Our mission: JSJ Strong aims to enhance and support the lives of Chordoma patients and their families through fundraising, advocacy, and direct patient support initiatives.
Our Vision: We envision a world where Chordoma patients and families do not financially struggle to pay medical and travel expenses.
What is Chordoma?
Chordoma cancer is a slow growing cancer of tissue found inside the spine. Chordoma can happen anywhere along the spine ranging from the skull (called a clival tumor) down to the tailbone (called a sacral tumor). Chordoma is also referred to as notochordal sarcoma.
How common is Chordoma?
Worldwide, around 1 and a million people are diagnosed with Chordoma every year. That is about 300 hundred people in the United States and 700 in Europe. At any given time, fewer than 1 in 100,000 people are living with Chordoma. This cancer is extremely rare.
What is the prognosis after a Chordoma diagnosis?
It is important to remember that the prognosis for each person is unique, and depends on many different factors. These include the patient’s age, type of chordoma, size and location of the tumor, method of treatment, extent of resection, and other factors. Only your doctors can advise about your individual prognosis and risks, and it’s very important that this advice come from doctors who have experience treating chordoma. With appropriate treatment, many chordoma patients will live for a decade or more, and some can be cured.
For more information, please visit the Chordoma Foundation Website.
Meet the Team
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Jeffrey Johnson
This man right here is the reason this organization has been created. His bravery throughout a long battle has inspired us to give back to the Chordoma community.
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Zachary Johnson
CEO and son of Jeffrey Johnson.
Zachary stood by his father’s side throughout his seven-year battle with Chordoma. Witnessing his fathers courageous struggle ignited Zachary’s determination to reshape the path of the Chordoma community.
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Mike Benson
Campaign Manager
Mike, along with numerous others, has felt the impact of cancer. He is determined to leverage his experience to lead fundraising efforts, with the goal of enhancing the well-being of cancer patients and their families on a global scale.
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Connor Molloy
Development Director
Zack and Connor crossed paths during a challenging time as Zack’s father battled Chordoma. That experience sparked a shared commitment to making a postive impact on the Chordoma community. Together, they strive to further the organization’s mission and bring hope to those facing similar battles.
Board of Directors
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