The Role of Disease Foundations in Support of Information and Research Advancements

This issue of ONCOLOGY highlights the information and discussions from the 2025 Mantle Cell Lymphoma (MCL) Scientific Consortium and Workshop sponsored by the Lymphoma Research Foundation (LRF). The LRF has convened its MCL Workshop since 2003. The goal of the biennial workshop is to bring together the world’s leading experts in MCL to discuss the latest research findings, receive updates on the progress of LRF grantees, foster collaboration within the MCL research community, create a direction for MCL research, and ultimately improve MCL diagnosis and treatment for patients.

With so many professional meetings, why do we need yet another one? This type of meeting is an important early incubator for basic, translational, and clinical research in a focused disease—in this case, MCL. The small group format of this type of meeting allows physicians and researchers who might not otherwise have had an opportunity to collaborate, to form the basis for multi-institutional trials and research collaborations. Multiple clinical trials using novel agents in various combinations or sequences have been discussed at prior and current MCL consortiums have now altered the standard of care and increased the time in remission for MCL patients. This type of think tank is best organized by an independent organization such as a foundation. This allows for involvement and interactions without the possible bias or restrictions sometimes imposed by pharmaceutical companies for pharmaceutical-sponsored clinical trials. In addition, the MCL basic and translational research community has successfully collaborated in research with agents such as Bruton tyrosine kinase inhibitors, chimeric antigen receptor T-cell trials, and bispecific antibody trials. These agents have made a significant difference in clinical outcomes for patients with MCL.

With the mechanisms and pay lines for local and federal funding becoming so much more difficult, the reliance on disease-specific foundations for meetings and research support has continued to increase. The foundations rely on private funding and philanthropy from pharmaceutical and other foundations to continue this important work as well as to provide support services for patients and families. All of us involved in oncology research should continue collaborations with foundations that are a vital part of our research teams.