Abstract IA28: What advocates can do to accelerate your research and enhance patient care: The perspective of memorial foundation focusing on a specific disease
Authors: Tichenor Lisa W. , Tichenor Mac T. , Moseley Neil 
Published: May 2015

Origination

QuadW (the What Would Willie Want Foundation) was formed in 2006 upon the death of Willie Tichenor from osteosarcoma. His parents, Mac and Lisa Tichenor, invited eight of Willie's friends, together with his brother, to constitute the board of directors. Based on Willie's wish that future victims of this terrible disease not run out of treatment options, like he did, the group determined that sarcoma research would be a significant focus of QuadW's grant making strategy.

From early on, QuadW has relied on the field's leading experts to guide its approach. In April 2007, at QuadW's request, a panel of sarcoma experts led by Dr. Lee Helman was convened by Dr. Marge Foti and the AACR. It was at this personal and informative meeting that we conceived a way QuadW could generate significant impact with targeted, precise investment in areas that are chokepoints to progress but are sometimes overlooked by traditional funding mechanisms.

Ultimately, the interaction put us on a path that we never expected to be on and that has turned out to be a source of significant impact in sarcoma research.

Our Work

The AACR Expert Panel identified two major impediments to progress in osteosarcoma research: 1) a lack of properly characterized and clinically-annotated osteosarcoma tissue samples on which to test new drug candidates and perform other experiments; and 2) inadequate resources within the Children's Oncology Group (COG) to conduct the biostatistical analysis of experiments to allow the results of those experiments to be published. As a result, we established collaboration with the Children's Oncology Group, now called the QuadW Childhood Sarcoma Biostatistics and Annotation Office (CSBAO), that has addressed these issues. This office has facilitated the publication of 10 articles so far, with a number more in progress. The effectiveness of the CSBAO in osteosarcoma has led to its expansion into other cancers including Ewing's Sarcoma and Soft Tissue Sarcoma.

The success of the CSBAO has encouraged QuadW to continue to convene experts and seek ways to encourage and assist the sarcoma research community as a whole. Our board members attend scientific meetings such as ASCO, AACR, CTOS, SARC, and COG, and have developed a solid understanding of the field. We have integrated into the fabric of the sarcoma community and value the relationships we have built. Our focus on the field as a whole rather than allegiance to a particular researcher has established QuadW as a partner in building bridges and solving problems in the infrastructure of sarcoma research that are impeding progress in the field. We look for ways to “lower the activation energy” for all sarcoma researchers, making resources more easily available and less expensive.

In addition to our focus on infrastructure, we move quickly to support areas in which we can make a difference for patients who have run out of treatment options like Willie did. We take advantage of opportunities to leverage existing initiatives. For instance, we recently stepped in to provide a relatively modest final leg of financial support for an NCI-sponsored Immunotherapy trial, allowing a highly innovative $2 million trial to move forward.

We understand improved treatments for sarcoma patients are dependent on the efforts of top researchers and clinicians. So we invest in rising stars through young investigator awards and clinical fellowships to help ensure a continual influx of top talent to fuel the effort. In the past seven years we have supported eight young investigator awards in sarcoma research and four sarcoma-specific fellowships in major cancer centers.

We have gained remarkable traction with what is, in the cancer world, a modest investment of money, coupled with a whole-hearted investment of time, energy, and enthusiasm. Encouraged by our successes and surveying the additional opportunities we see to make a positive difference, we have embarked on a program to increase our funding capacity as we see how we can make even greater headway.

Citation Format: Lisa W. Tichenor, Mac T. Tichenor, Jr., Neil Moseley. What advocates can do to accelerate your research and enhance patient care: The perspective of memorial foundation focusing on a specific disease. [abstract]. In: Proceedings of the AACR Special Conference on Pediatric Cancer at the Crossroads: Translating Discovery into Improved Outcomes; Nov 3-6, 2013; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2013;74(20 Suppl):Abstract nr IA28.