Transforming Health Care through Innovative and Impactful Research

Abby Sandler, Ph.D. (Text Version)

Title: A Foot in Both Worlds

Abby Sandler, Ph.D.

I was originally trained as a bench scientist. I have a Ph.D. in biology. I figured out pretty early on that the lab really wasn't the place that made me happy. And so I branched out, got involved in cancer policy for a number of years, and now I focus mostly on the advocacy side of cancer.

I'm a mother of a child who was diagnosed with a rare sarcoma right after her eighteenth birthday. I can communicate with the researchers and the advocates because I sort of have a foot in both worlds. And part of what I do is try to bring them closer together so that they listen to each other.

I have really enjoyed being on the rare cancer research panel. It's an amazing group of people. What I love about it, we have a great mix of expertise. But there is a culture of respect, and everyone's voice is heard. There's a very strong advocacy presence on the panel. A number of the panel members are cancer survivors themselves, or are parents of children who've had pediatric cancers, all of which are rare.

So the Rare Cancer Research Program complements some of the other funding programs out there. NIH obviously funds plenty of grants and they do fund work on rare cancers. But this is a dedicated funding mechanism that's only for rare cancers.

I think, to me, where the RCRP is unique is the Resource Community Development Award. The RCRP’s Resource Community Development Award is a mechanism that, to me, does not exist anywhere else. It's unique because the requirement is that you are developing some kind of platform or resource that will be accessible to the rare cancer community.

Ideally, it’s going to be something that's focused on more than one rare cancer. But the most unique part of it is the requirement that advocacy be involved in every aspect of that grant that's submitted. So, from the very beginning, you have to be able to show that you're engaging advocates every step of the way. And that focus on having the advocates work hand-in-hand with the researchers, I don't think it exists anywhere else. I've never seen a mechanism that requires that.

My background is that I was trained as a scientist. But nowadays I think of myself as a recovering scientist, because I have not been in the lab for a very long time. But having the ability to bridge that world, being also an advocate because of my daughter's experience with the rare cancer, and having observed for so long that these are two groups of people who don't always talk to each other.

And I think advocates feel strongly that their voices need to be heard by the scientists. I think it's harder for the scientists, and coming from that scientific background, I can say that. And for the handful of investigators who have so far been successful with the Resource Community Development Award applications, I think they have a great appreciation and they figured out sort of that secret sauce and what the magic formula is to get that advocate input early on and weave it through the application and through the projects that are now ongoing.

It's a challenge. To put it in the scientific perspective, there's an activation energy we have to overcome with the investigators to get them to see how valuable that advocate input can be to their research. And I think if we could just get them over the hump of that activation energy, it would just be so much better. And sometimes it's really hard to do that.