24 min

Light From Darkness - Navigating Postmortem Tissue Donation Journal of Clinical Oncology (JCO) Podcast

    • Science

On this episode, our guests discuss how postmortem tissue donation can provide meaning to patients and their loved ones.
 
TRANSCRIPT
Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours. This is when we get in-depth on articles that are published in the Journal of Clinical Oncology. I am your host, Shannon Westin, GYN Oncologist and Social Media Editor of the JCO.
Excited to be here today to discuss a really awesome paper. It was a Comments and Controversies named “Postmortem Tissue Donation: Giving Families the Ability to Choose,” just published on August 26th, 2022.
And I'm joined by a number of the authors. It's going to be a really incredible discussion. I'd like to introduce each of them, and then we'll get right down to it.
First is Allen Gustafson. He is the founder of the Swifty Foundation, which he started with his son, Michael, who sadly died in 2013 of medulloblastoma. And this foundation really was the catalyst of the group Gift from a Child, which we're going to really discuss today.
In addition, I'm accompanied by Dr. Angela Waanders, the Interim Head of Neuro-Oncology and the Director of Precision Medicine and Associate Professor at the Ann & Robert H. Lurie Children's Hospital of Chicago; Beth Frenkel, a Tissue Navigator at the Children's Hospital of Philadelphia; and Dr. Mateusz Koptyra, a Senior Scientist and the Director of the Center for Data-Driven Discovery in Biomedicine at the Children's Hospital of Philadelphia.
So, thank you all for being here. I'm so excited to discuss this paper. I think this is something that our listeners are going to be really interested in and really want to move forward. So, welcome.
Allen Gustafson: Thank you.
Dr. Mateusz Koptyra: Good morning.
Dr. Shannon Westin: So, let's get started. You know, postmortem tissue donation is so critical for research and improving outcomes for our survivors. I think the best way to start, I'd be very interested to hear how each of you got involved with this.
And Allen, let's start with you because I think that your story is so important.
Allen Gustafson: Sure. Thanks, Shannon. Well, as you mentioned, our son, Michael, died of medulloblastoma in 2013 at the age of 15, and probably about four months before he died, he knew his life was going to end. And he got the idea of donating his body to science, so they could use him to find the cure. And he used to refer to that as his master plan. So, obviously, that charge was put on his mom and I to figure out how he could do that. And although we were being treated by two excellent hospitals, one here in Chicago and one in Boston, they were not helpful in terms of helping us with his final wish.
And so, it was really through Nancy Goodman from Kids vs Cancer and his pediatrician going above and beyond the call of duty that Michael was finally able to donate his spine and his brain, some of which was sent to Texas Children's and some of it was sent to SickKids. And it became both very meaningful for him as his life ended, and it was also very meaningful for us in terms of the important step we took as a family in our grieving and our loss of him. And as you mentioned, our work with the Swifty Foundation, really, his choice there was prescient, in that we didn't realize how important postmortem collection is for advancing scientific discovery, nor did we realize how important this could be for other families. So, it all started with his experience in terms of our journey with Gift from a Child.
Dr. Shannon Westin: That's so incredible. I'm so glad that you chose to do this work. Dr. Waanders, do you want to pipe in?
Dr. Angela Waanders: Yes. So, I think reflecting back, it really was a serendipitous moment in meeting with Patti and Al. I can still remember it was in 2016, I believe, at a Children's Brain Tumor Network annual meeting. I'm a Physician Scientist, a practicing Neuro-Oncologist, and at the time, I was in the laboratory trying to diss

On this episode, our guests discuss how postmortem tissue donation can provide meaning to patients and their loved ones.
 
TRANSCRIPT
Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours. This is when we get in-depth on articles that are published in the Journal of Clinical Oncology. I am your host, Shannon Westin, GYN Oncologist and Social Media Editor of the JCO.
Excited to be here today to discuss a really awesome paper. It was a Comments and Controversies named “Postmortem Tissue Donation: Giving Families the Ability to Choose,” just published on August 26th, 2022.
And I'm joined by a number of the authors. It's going to be a really incredible discussion. I'd like to introduce each of them, and then we'll get right down to it.
First is Allen Gustafson. He is the founder of the Swifty Foundation, which he started with his son, Michael, who sadly died in 2013 of medulloblastoma. And this foundation really was the catalyst of the group Gift from a Child, which we're going to really discuss today.
In addition, I'm accompanied by Dr. Angela Waanders, the Interim Head of Neuro-Oncology and the Director of Precision Medicine and Associate Professor at the Ann & Robert H. Lurie Children's Hospital of Chicago; Beth Frenkel, a Tissue Navigator at the Children's Hospital of Philadelphia; and Dr. Mateusz Koptyra, a Senior Scientist and the Director of the Center for Data-Driven Discovery in Biomedicine at the Children's Hospital of Philadelphia.
So, thank you all for being here. I'm so excited to discuss this paper. I think this is something that our listeners are going to be really interested in and really want to move forward. So, welcome.
Allen Gustafson: Thank you.
Dr. Mateusz Koptyra: Good morning.
Dr. Shannon Westin: So, let's get started. You know, postmortem tissue donation is so critical for research and improving outcomes for our survivors. I think the best way to start, I'd be very interested to hear how each of you got involved with this.
And Allen, let's start with you because I think that your story is so important.
Allen Gustafson: Sure. Thanks, Shannon. Well, as you mentioned, our son, Michael, died of medulloblastoma in 2013 at the age of 15, and probably about four months before he died, he knew his life was going to end. And he got the idea of donating his body to science, so they could use him to find the cure. And he used to refer to that as his master plan. So, obviously, that charge was put on his mom and I to figure out how he could do that. And although we were being treated by two excellent hospitals, one here in Chicago and one in Boston, they were not helpful in terms of helping us with his final wish.
And so, it was really through Nancy Goodman from Kids vs Cancer and his pediatrician going above and beyond the call of duty that Michael was finally able to donate his spine and his brain, some of which was sent to Texas Children's and some of it was sent to SickKids. And it became both very meaningful for him as his life ended, and it was also very meaningful for us in terms of the important step we took as a family in our grieving and our loss of him. And as you mentioned, our work with the Swifty Foundation, really, his choice there was prescient, in that we didn't realize how important postmortem collection is for advancing scientific discovery, nor did we realize how important this could be for other families. So, it all started with his experience in terms of our journey with Gift from a Child.
Dr. Shannon Westin: That's so incredible. I'm so glad that you chose to do this work. Dr. Waanders, do you want to pipe in?
Dr. Angela Waanders: Yes. So, I think reflecting back, it really was a serendipitous moment in meeting with Patti and Al. I can still remember it was in 2016, I believe, at a Children's Brain Tumor Network annual meeting. I'm a Physician Scientist, a practicing Neuro-Oncologist, and at the time, I was in the laboratory trying to diss

24 min

Top Podcasts In Science

Hidden Brain, Shankar Vedantam
Alie Ward
Neil deGrasse Tyson
PRX and Greater Good Science Center
Jeremy Corbell, George Knapp, Cadence13 and Dark Horse Entertainment
Sam Harris