Joel Walker, an adult with FA, passed away from complications of head and neck cancer in November 2016, at the age of 33. Joel was a talented student, good at sports, sociable and happy. Research into treatment for FA was a high priority for Joel, along with the hope that he could help others, so he left a large part of his estate to the Fanconi Anemia Research Fund. In honor of their son, Joel’s parents, Nigel and Ann Walker, created the Joel Walker Cancer Series. The goal of the series is to bring experts from various fields together to focus on research and treatment specific to cancer in FA. The generous bequest from Joel’s estate and on-going support from the Walker family make this important series of scientific meetings possible.
In 2021, the Walker family is hosting an FA Cancer Ideas Lab in partnership with the Fanconi Anemia Research Fund (FARF). More information on this event and funding opportunities will be posted in July 2021.
The third Joel Walker Meeting took place April 23, 2020. Forty researchers, doctors, FA family members and FARF staff members joined a webinar to talk about head and neck cancer in Fanconi anemia. They sat in their home offices, second bedrooms, and living rooms to spend the day sharing their research, throwing out ideas, and piecing together a roadmap to detect, treat and prevent head and neck cancer in those with FA. Building on the framework established at previous meetings, the group included head and neck cancer experts newer to the FA community.
This year, clinicians and researchers focused largely on the following:
FARF will continue working with this focused group (including members of the FA Adult Council and FARF Scientific Advisory Board) to expedite ways to prevent, detect, and treat HNSCC. Next steps include:
The second Joel Walker Meeting occurred April 18, 2019 in San Francisco. The aim of this day-long summit was to again bring the experts in the head and neck cancer field together to cross-pollinate ideas and build a strategy to combat HNSCC in FA patients. The program covered a wide range of topics, including treatment, early diagnosis, and emerging trends in managing head and neck cancers. The two overarching outcomes of the summit that FARF has now implemented included: (1) the development of a virtual tumor board to inform treatment; and (2) the establishment of a tissue sample system to identify effective therapies.
The virtual tumor board (VTB) is a group of medical care specialists who meet through a virtual platform to discuss individual cancer cases and determine the best possible treatment plan for the patient. A concern of the FA population is the lack of doctors experienced with adults with FA. The VTB will help address this issue.
While the virtual tumor board provides a platform to advise potential treatments, we also need a process to collect tissue samples from individuals with FA who have surgery. The bottleneck in this process has not been patient willingness or finding researchers and labs to store and analyze the samples. Instead, it has been getting the tissue from the operating room to the lab. FARF is working with a nonprofit organization that was created to enable cancer patients to direct their tumor tissue to researchers working on building cancer models. Once the patient has notified them of an upcoming surgery, FARF, along with this organization, will work directly with the hospital to obtain the tissue and transfer it to a lab. We continue to explore what a partnership with this organization will look like and feel optimistic it may provide a solution to this challenge.
These initiatives are possible thanks to the generosity of donors who give to the Joel Walker Scientific Meeting Series.
The first meeting, Head and Neck Cancer in FA: Developing Guidelines to Maximize Therapeutic Outcomes, took place in April 2018 at the University of Pittsburgh Medical Center. Below is a link to an overview of head and neck cancer in Fanconi anemia, gathered at the first meeting.