Stories of progress, inspiration, and information in overcoming osteosarcoma.

the QuadW board posing for a picture

Eight Friends Asked One Question

For more than 15 years, the QuadW Foundation has asked one critical question: What Would Willie Want? This question led to the Osteosarcoma Institute’s founding.

The Osteosarcoma Institute was founded in 2017, but the seeds were planted back in 2006, when 19-year-old Willie Tichenor lost his battle with osteosarcoma. He left his parents with two requests: To take care of his friends and to find better treatments for osteosarcoma.

After Willie’s death, his family — parents Mac and Lisa, and brother Taylor — gathered eight of Willie’s closest friends in their living room. Together, these friends worked on a mission statement for what would become a foundation carrying on Willie’s legacy. It was called “What Would Willie Want,” or QuadW for short. In the words of the mission statement, the foundation aspires to “reflect the light-hearted but whole-hearted spirit that Willie embodied.” QuadW knew the work would be difficult, but also knew Willie would expect them to have fun in the face of this serious business.

Mary Katherine Clarke, QuadW’s executive director and advisory director, was one of those initial eight friends. “When Mac and Lisa asked us to be on the board of QuadW, it was an honor,” she says. “We did not know it at the time, but it served two purposes. On one hand, it kept us close and connected, and it gave us a way to channel our grief. Secondly, it taught us how to be philanthropists as we answered that question of what Willie would want.”

Building the Foundation

From the beginning, QuadW worked to break down barriers in the research field so that they could make progress in the treatment of osteosarcoma. This meant connecting leading sarcoma clinicians and researchers from various institutions to collaborate on new therapies.

“We looked at the landscape and asked ourselves, ‘What infrastructure is required to help move the field forward?’” says Bret Alexander, QuadW’s chair, president, and treasurer.

QuadW’s board, pictured above, discovered that one of the biggest problems in osteosarcoma is that researchers do not have enough biological material on which to perform research. The QuadW Childhood Sarcoma Biostatistics and Annotation Office (CSBAO) of the Children’s Oncology Group (COG) aimed to solve that.

QuadW partnered with the COG and, later, a major study called the TARGET Osteosarcoma Project to collect tissue samples from sarcoma patients all over the country, giving researchers access that never existed before in the field. As a result of QuadW’s tissue bank work, the DNA of the osteosarcoma genome was sequenced through the TARGET project.

Moving the Needle

After 10 years of tackling osteosarcoma through the foundation, QuadW realized that while they had made significant progress removing obstacles for researchers, the outlook for patients remained the same. “Willie would have had the same outcome even if he had been diagnosed 10 years later,” says Mary Katherine. As a result, QuadW launched the Osteosarcoma Institute (OSI) to cure osteosarcoma or significantly improve survival rates.

The OSI, which functions as a virtual institute, makes it possible for the best sarcoma scientists, researchers, and physicians from around the world to collaborate on research that will advance osteosarcoma treatment. Because it is virtual and not bound to a region, the opportunities are limitless. “This allows us to work as scientific brokers,” says Mary Katherine. “We are not beholden to one institution or one organization.”

Since its inception in 2017, the OSI has:

  • Recruited some of the field’s brightest minds to the OSI’s Strategic Advisory Board and Lee Helman, MD as the OSI’s director
  • Identified and hired talented staff to support the Strategic Advisory Board’s key initiatives as well as the OSI’s fundraising, marketing, and operating needs
  • Contributed more than $5.2 million towards clinical trials and research studies to improve outcomes for osteosarcoma patients
  • Established OSI Connect, a free service that allows patients and families throughout the world to have their questions answered by an osteosarcoma expert
  • Established several key partnerships with families and foundations wishing to co-fund research studies and trials
  • Raised national awareness about osteosarcoma through The Frontline blog and social media

“We would not have had the confidence, experience, or the vision to take the OSI to the next level without the close-knit relationships that QuadW built in its first 10 years,” says Mary Katherine. “Those relationships in the cancer research network, research consortiums, and collectives made it possible to create the OSI.”

Transforming a Tragedy

Through Mac and Lisa’s leadership and dedicated work, Willie’s friends found a way to transform the tragedy of losing him to create something larger that may change the way osteosarcoma is treated.

“I wish in my heart that Willie’s death had never happened, but I’m so grateful for the things that we have accomplished because of it,” says Mary Katherine.

“It is hard to imagine where I would be without QuadW and what it has done for me in my personal and professional life,” adds Bret. “I think if Willie were here, he would ask, ‘What’s next?’ I am excited to see where the next 15 years will take us.”

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