The team at Children’s Minnesota has become a valued partner with our GFAC program. The team at CM and our team at Lurie’s have developed a close working relationship that supports families seamlessly as they navigate the loss of their child. We are so grateful for their partnership and support. Below is a recent blog they wrote about their experience.
Children’s Minnesota is extremely grateful for the relationship that has developed with the Gift from a Child (GFAC) program. Children’s has the largest pediatric cancer and blood disorders program in the Upper Midwest with a strong emphasis on clinical research. Research is the only way we can make progress in the cure rate of childhood cancers. The Children’s Minnesota pediatric brain tumor program is led by Dr. Anne Bendel and Dr. Maggie Skrypek who are active members in many collaborative brain tumor clinical research groups, including the Pacific Pediatric Neurooncology Consortium (PNOC), Children’s Oncology Group (COG), St. Jude’s Consortium, Next Consortium, and others, which allows their brain tumor patients access to clinical trials using novel therapies.
In 2009, the Children’s Minnesota brain tumor team had its first exposure to post-mortem tumor donation solely for the purpose of research. The family of a 7-year-old boy, with end-stage medulloblastoma, requested his tumor be donated, at the time of his death, to help researchers find more effective treatments for pediatric medulloblastoma. Dr. Bendel made multiple phone calls to researchers around the U.S. and coordinated an autopsy for tumor removal followed by shipment of tumor samples to several medulloblastoma research labs. Although the post-mortem tumor donation was successful for this patient, it took a great deal of time and coordination by the Children’s Minnesota brain tumor team and, in the end, the team wondered if the tumor reached all interested medulloblastoma researchers.
Fortunately, in 2019 the Gift from a Child program was established, which opened the door to post-mortem tumor donation for all pediatric brain tumor patients, irrespective of the diagnosis. The key to the success of the GFAC program is the ease of participation, the strong desire of patients and families to donate post-mortem tissue, and the efficiency and compassion of the GFAC tissue navigators. Melissa Williams is the GFAC tissue navigator for the Children’s Minnesota team and she is absolutely amazing at this role. The Children’s Minnesota team introduces the option of post-mortem tumor donation though GFAC to families near the time of their child’s death, and Melissa will reaches out to interested families and reviews the option of tumor donation for research, get consent from families who choose to proceed, and coordinate all aspects of the tumor donation, ensuring that the tumor tissue is processed appropriately and delivered to multiple pediatric brain tumor researchers. Melissa also updates the patient’s family and the Children’s Minnesota team regarding which research labs receive tumor tissue from each child. This is a true collaboration between the Gift from a Child program and Children’s Minnesota patients, their families and the Children’s Minnesota neuro-oncology, pathology, and hospice teams. Dr. Anne Bendel, director of the Neuro-oncology Program at Children’s Minnesota believes that post-mortem tumor donation through the GFAC program is one of the most important research endeavors available at Children’s Minnesota.
“We are truly grateful for our partnership with Gift from a Child and to have the program available for our patients and their families. This program is very rewarding for families going through the death of their child due to the lack of effective treatments for their child’s brain tumor. When a family donates tissue to cancer research it can help lead to the discovery of new treatments that can improve the outcomes for other children with cancer”.
Melissa Williams, our tissue navigator from Gift from a Child is incredibly compassionate, knowledgeable and accommodating and makes it easy for families to participate.
Dr. Anne Bendel, director of the Neuro-oncology Program at Children’s Minnesota
Since partnering with Gift from a Child in 2019, we offer all Children’s Minnesota brain tumor families the option of post-mortem tumor donation, and over 60% choose to participate. These families find hope and comfort in the GFAC program because studying their child’s tumor might make a difference for future children with brain tumors.
