Help and Hope Podcast Part of Advocacy Push
Patti and Al Gustafson will go anywhere and talk to anyone about their son Michael, who died of brain cancer at age 15. The Gustafsons want everyone to get the message: families can help find a cure for cancer by donating their child’s post-mortem brain tissue to research. This is all part of a concentrated education and advocacy effort with the goal of asking families to consider tissue donation becoming a standard medical practice.
Recently, Patti and Al were on Mark Levine’s “Help and Hope Happen Here” podcast, available here and on many podcast apps.
For his podcast, Levine interviews oncologists, nurses, patients, families, leaders of pediatric cancer foundations and organizations, and others who are committed to finding better treatments.
Michael Gustafson shared that commitment. During the late stages of his disease, Michael told his family that he was willing to give up his life so researchers could “use him to find a cure for cancer.” And after discovering that he could donate his post-mortem brain tissue, Mikey wanted to make it possible for others to donate as well.
Advocating for tissue donation is why the Gustafson’s created Gift from a Child (GFAC), a network of tissue donation Regional Centers of Excellence. Dr. Angela Waanders is a Lead Investigator at Lurie Children’s Hospital in Chicago, one of GFAC’s Regional Centers of Excellence, and she is also featured on Levine’s podcast talking about the importance of post-mortem brain tissue donations.
In the podcast, Patti and Al introduce other families to their son and tell some tender and funny stories about the good and bad days of his illness. Listen to the podcast and learn about Michael’s Mountain, how the whole Gustafson family is involved in the effort to promote tissue donation, and how Michael learned to “draw in 30 days!”
Aside from getting to know Michael, Patti, and Al, we hope those who hear the message also learn that Gift from a Child can help any family anywhere in the country donate their child’s precious tissue to research.
“The best analogy is organ donation,” Patti said recently. “It took a sustained effort of education and advocacy before we knew of its value.”
As with organ donation, post-mortem tissue donation is a decision that offers a family hope after a child’s life ends too soon. It is also a decision that only families can make. And a choice that they have the right to be informed about.