THE GUSTAFSONS GO GRAY TO RAISE AWARENESS ABOUT TISSUE DONATION
Allen and Patti Gustafson founded the Swifty Foundation with their late son, Michael, to raise research funds and awareness for pediatric brain cancer. Michael passed away after battling relapsed medulloblastoma at the age of 15, and he decided to donate his tumor to research via rapid autopsy.
After learning about the positive impact Michael’s donation was having on research, the Gustafsons founded the Gift from a Child initiative through Swifty to ensure other families like theirs would be informed of the opportunity to donate their child’s tissue post-mortem, and that there would be an infrastructure in place to enable such donations to benefit research.
“When Michael came up with his Master Plan to ‘donate his body to science so they can find a cure,’ we had no idea that his plan would become Swifty’s plan. Our mission became raising awareness about the need for and lack of post-mortem tissue for research.”
Researchers rely on tumor tissue to make discoveries related to the causes and behavior of pediatric brain tumors, and to explore potential new treatments. They need tumor samples from many pediatric brain tumor types that differ in location, histology, genetic markers, and treatment histories. The more tissue samples they have access to, the better their chance of finding answers to the questions holding back discoveries in pediatric brain tumors.
“We learned that many bereaved families would have liked to donate but were never asked,” said Patti. “Knowing the importance of tissue donation for finding cures and wanting to affect a cultural change, we needed to raise awareness around this difficult topic by bringing people together to have a unified voice.”
This May, please help us to raise awareness about the Gift from a Child program and the importance of tumor tissue donation in the pediatric brain tumor community.