From grief to action: Founding the Shane Osteosarcoma Association

by Cédric Bochsler

In the summer of 2024, our lives changed forever. Our healthy, active son Shane suddenly began to suffer from pain in his leg. What seemed at first like a sports injury quickly turned out to be something no parent ever expects to hear: osteosarcoma, a rare and aggressive form of bone cancer.

Despite his incredible courage and the best possible medical care, Shane’s journey was filled with hospital stays, chemotherapy sessions and moments of hope followed by devastating setbacks. In December 2024, we lost Shane. He was just a child, full of life, dreams and kindness.

Out of this unimaginable grief grew a determination: Shane’s story should not end here. We founded the Shane Osteosarcoma Association to honor his memory and to help others walking the same painful path.

Why Osteosarcoma Needs More Attention

Osteosarcoma is the most common malignant bone tumor in children and adolescents, but it is still considered rare. This rarity makes it difficult to fund research, run clinical trials and provide families with adequate support. Too often, children and their parents face not only the illness but also uncertainty, isolation and a lack of accessible information.

Through our association, we want to raise awareness that childhood cancers like osteosarcoma deserve more visibility. Early diagnosis, better treatment options and comprehensive family support can make a real difference.

Our Mission

We built the association on three pillars that reflect both Shane’s journey and the gaps we witnessed:

• Awareness: Spreading knowledge about osteosarcoma to the public, medical community and policymakers to ensure better recognition and earlier diagnosis.
• Research Funding: Supporting innovative projects that focus on new therapies and personalized medicine, so that future children have more treatment options than Shane did.
• Family Support: Offering emotional and practical help to families navigating the complex and exhausting reality of childhood cancer.

These pillars not only honor Shane’s legacy but also reflect our conviction that no family should face osteosarcoma alone.

We established the Shane Osteosarcoma Association in May 2025 and are based in Switzerland. So far, we have 83 members. We are building the family support network, are collaborating with local hospitals and KidsCan – a Swiss association dedicated to accelerating the development and implementation of new clinical possibilities for children’s health.

Building a Global Community

When we discovered SPAGN, we immediately felt the importance of connecting with an international network of advocates, patients, caregivers and professionals. Sarcoma knows no borders and progress in research and care depends on global collaboration.

By sharing Shane’s story here, we hope to strengthen these bonds, inspire other families to turn their pain into advocacy and contribute to a worldwide movement for change.

A Call to Action

 Shane taught us what resilience, kindness and courage truly mean. His life may have been short, but his impact continues. Through our work, we want his legacy to reach far beyond our family and inspire action for all children and families affected by osteosarcoma.

We invite you to join us: share awareness campaigns, support research initiatives and connect with families who need encouragement and solidarity. Together, we can ensure that every child with osteosarcoma has access to hope, community and better treatment options.

 

Credits:  Photos provided by Cédric Bochsler for publication by SPAGN