In October, ten year old William (Billy) Guy Forbeck was diagnosed with neuroblastoma, a rare childhood cancer that affects only 650 children a year. There is no cure for neuroblastoma, and it has a bleak prognosis. Billy began a thirteen month odyssey of visiting medical facilities and receiving experimental treatments, but unfortunately he succumbed to neuroblastoma at age 11.
Billy’s parents, George and Jennifer Forbeck, established the William Guy Forbeck Research Foundation (WGFRF) in Billy’s memory. From the outset, an underlying principle of WGFRF was drawn from Billy’s hospital experience: to drive the exchange of ideas and cross-fertilization between scientific disciplines to advance the understanding of, and identification of effective treatments for, cancer.
The first, and today the cornerstone program of WGFRF, Annual Forum was held in the fall in Hilton Head, SC, when twelve scientists met to focus on the subject of “Neuroblastoma.” A Forum has been held in Hilton Head every year since. Although the chairperson and topic changes each year, the format of a small interactive meeting has continued. WGFRF continues to emphasize discussion and exchange of new concepts, rather than presenting published research. The group is kept intentionally small, and past Forums have included the cream of international scientific cancer leaders. A rich experience for those that attend, numerous collaborations have resulted from the Forum series.
The 1985 Forum focused on neuroblastoma and was followed by an international WGFRF-supported conference focused on establishing worldwide standards of terminology for neuroblastoma diagnosis. This resulted in the formation of the International Neuroblastoma Staging System and International Neuroblastoma Risk Group (INSS/INRG), an international initiative that generated the first universally used measures for monitoring neuroblastoma patients. WGFRF has funded a series of INSS/INRG conferences to this day, to further refine and updated the criteria.
Recognizing the importance of supporting the next generation of scientists, the Foundation began honoring each year one scholar in training in the field of oncology research thought by their mentor to represent a future leader in the field. The Forbeck Scholar receives an Award and an invitation to the Annual Forum. The success of the Scholar Award program led to its growth; today, four Forbeck Scholars are recognized per year.
WGFRF offered Focus Meeting Award to support small meetings that would follow a similar model to the annual Forbeck Forum, allowing applicants to propose topics addressed and participants attending. In 2010, the Foundation limited Focus Meeting Awards applicants to current or prior Forbeck Scholars, thereby creating a mechanism for cultivating the future leaders of oncology research.
With the growth of the Scholar Award program, WGFRF began hosting an annual Scholar Retreat in Lake Geneva, WI. Scholars are invited to the retreat annually for a term of four years to present and discuss their research, keeping the group at an intimate 16 Scholars per year. Three or four scientific leaders serve as mentors each year.
WGFRF commenced support of the Interactive INRG Database, an international repository of data on over 10,000 neuroblastoma patients (and growing). WGFRF is co-sponsoring this with St. Baldrick’s Foundation. The funding will support the evolution of the Database into a resource that links to other patient databases and is easily accessible online by scientists and clinicians worldwide, thereby facilitating research collaborations.
WGFRF engaged in Strategic Planning to assess its existing scientific programs and identify areas for new growth. WGFRF is committed to continue and potentially expand upon existing initiatives, and to develop new programs that would accelerate the identification of effective neuroblastoma drug therapies. A critical part of this will be spearheading a collaborative with other foundations and entities focused on neuroblastoma, with a goal of engaging biotechnology and pharmaceutical companies in this charge.
The Forbeck Foundation initiated the Neuroblastoma Consortium, a collaborative organization for family foundations focused on Neuroblastoma around the world. Organizations from the US, Canada, Europe and Australia working together to strengthen family foundations and the impact they can have on battling Neuroblastoma.