Vanessa Johansson inspires investigator and supports synovial sarcoma studies.

Vanessa Johansson inspires investigator and supports synovial sarcoma studies.

Vanessa Johansson is a visionary entrepreneur, passionate health care advocate, and patient with synovial sarcoma—a rare and aggressive soft-tissue cancer. Since her initial diagnosis in 2015, she has been unceasing in her exploration of studies into this disease, and found new hope when she encountered the work of Dana-Farber’s Cigall Kadoch, PhD. In Kadoch, Johansson discovered a kindred spirit whose determination to defy cancer matched her own, and whose revolutionary research was the key to creating a brighter future for patients everywhere.

Recently, Johansson made a gift of $1 million to establish the Vanessa Johansson Fund for Synovial Sarcoma Research in support of groundbreaking basic science led by Kadoch, and is raising additional contributions from friends, family, and associates through her Giving Page on the Jimmy Fund website.

Kadoch’s lab studies the structure and function of the BAF complex, a key molecular “machine” which modifies DNA architecture and is frequently mutated in more than 20% of all cancers, including 100% of all synovial sarcomas. By going straight to the source of disease progression, her team’s investigations are yielding foundational biological insights and broadly applicable innovations with a diversity of potential benefits. For example, they recently created the first-ever three-dimensional model of the BAF complex, providing an opportunity to spatially map thousands of cancer-associated mutations within the complex and understand their functions. Advances like this are informing the development of novel treatments—including the first-ever targeted therapy for synovial sarcoma, which, based on Kadoch’s work, is moving from the lab to the clinic in early phase trials imminently.

Johansson is intimately familiar with the desperation for better treatments, having tried numerous therapies to no avail, and having heard many heartbreaking accounts of fellow patients who have been similarly devastated by synovial sarcoma. She also recognizes that the story of this underfunded, and therefore understudied, disease can only change with new ideas, more research, and greater investment in innovative investigators like Kadoch. “Cigall is really on to something very different and very exciting, and she is truly transforming the landscape of cancer medicine,” said Johansson.

For Kadoch, the admiration and trust are mutual, as Johansson has proven to be the perfect partner in her lab’s pioneering efforts, both enabling and embodying the bold, creative thinking that leads to the most game-changing advances. “Vanessa is an exemplary person with a mission to make a major difference,” said Kadoch. “Her visionary philanthropy reflects who she is and inspires us tremendously as we strive to advance our understanding and treatment of synovial sarcoma.”

While Johansson and Kadoch have connected to tackle this specific cancer together, they both know that the latter’s research has far-reaching implications across multiple diseases, and therefore touches everyone in a tangible way. Johansson said: “The scale and impact of Cigall’s work is profound, so I will gladly devote whatever life I have left to ensuring that it keeps moving onward and upward.”

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