Being Involved in Research

There has been, OK, this is something I have chosen to do. We have a research institute here that gets a lot of the NIH grants, and they are working on targeted breast cancer drugs and immunotherapy. And they were looking for someone to be on, a patient representative, a breast cancer patient representative to be on their board and to be part of their study. They were looking for five patients to be, and this is an NIH grant. I had to submit my data and I was accepted. And we meet quarterly and I can do it via Skype. And they ask for input and this eventually, one day, will be a clinical trial of drugs that will be very targeted hormone therapies. And so I was blessed to be, I think, part of that. And but I have not, at this point in time I have not needed a clinical trial. But I have, like I said, I wanted to participate because I felt this was important on down the road, if I were to ever have a recurrence. I felt that it would have been important for me to try to help in that development of a very targeted drug.

So, I just really do a lot of advocating. I do like—right now, I'm in the midst of—I mean last night at 11:00 PM central because midnight Eastern was a deadline for revised grants. I do grant reviews for the MS Society nationally through the Department of Defense. And so, I did that. I do that on a regular basis.

Now, I know I started—part of what I've done in terms of research is I do work with [ORGANIZATION]. And I appreciate everything I learn in that experience. Because they learn, and I like that. I learn, and I like it. And it gives me the sense of somehow, in some weird way, me being sick may help somebody get better. So, the fact that they—I think they asked me if I was interested in donating my body to science once I'm dead. I find that very, very cool. I mean, hopefully they don't help me die in the first place, which I don't want to do. I don't want to die. But what I mean is more about the idea that, more than ashes, your body can be used for something. I find that to be really, really neat. If they come and pick up the body, even better. It resolves a lot of logistical things.

So that was interesting from like a genetic standpoint, but the studies, to me, are interesting because I like working with the students, I always want to know what they're doing, what they're studying, where they are in their studies and try to encourage them. I like to do the studies because I think they're interesting. I want to see how it relates to me, and then I see through the years the changes, how things have progressed. And so, I feel that it's important to do those. And I like connecting with people all over the United States. That's been interesting for me.

So that was a huge one, and I was not compensated for that, but it was a lot of time. But I felt really strongly because I think one of the challenges a lot of researchers experience is not having access to good data. And the more people that are providing samples, whether it's physical samples or information like this interview, and so forth, that gives other researchers the tools that they may need to decide on what kind of research, or to expand on research, and I feel very strongly about that.

And now I am directly involved in that money that I’ve advocated for. And I’m part of a clinical long-term study to watch and evaluate the effects of MS over my lifetime. So, I will be going every year until I die for them to do full evaluations, blood work, MRI, everything, to evaluate how I’m doing over the months of my life, from this point forward. And then when I die, my brain and my spinal cord are going to be donated to NIH for MS research. That makes me very, very happy. So, it’s about a six‑month interview and, you know, trying to work, but I just was passionate about this particular study, and for me it works out because it’s close. I love the topnotch care I’m going to receive.

And then there is another one with the [INSTITUTON], and it has to do with genetics and the chemicals in the medicine that we're taking. And so that one is kind of interesting because he says that there are certain markers in us with MS, that we should refrain from certain anti-inflammatory medicines. So, , I'm really interested about that. So, when I get back home, because he sent me a kit to—I think it's based on saliva. So, once I get home, I will do that saliva, send it to him, and then he's going to do a test on that. Because my other concern is genetics. I want to know what's—my daughter. I want to know—I have MS, and I want to know, what's the propensity of her getting it? Is there certain genetics? Are there certain markers? So that, hopefully, that we can identify, so that she won’t be getting it.

And I don't even know if I could call it the trial or it's a long-term study where I have to take MRI and I have to submit blood. So, they take blood from me every time I go there. And then my eyes, the OCT scans. And there was—and again, I don't know what it is called, the study, something very complicated. But I remembered was that I had—and then some movement studies, so I have to come and see this physician. And it was very—she ended this study, but it was very obvious how I was getting worse with that. I had to walk a certain stretch of the floor in that case. First, I could walk without the cane. Then that was not even an option even if I had tried. So, I had the walk with the cane. But basically, then she would time me, and I would walk slow and slow. But that's one—I don't know if it's trial, but yeah, it was just for the purpose of studying. And yeah, but nothing that would really endanger me. And I forgot what else. Nothing major, I guess.

And will they keep following her throughout her life, do you know? Like how long they’re planning to—

Danielle: I believe so.

Jeanne: Well, they said until 16, and then it’s up to her. She gets to decide whether she wants to continue. But for now while she’s still the guardian we get to choose that she can participate. But they talked about age 16, so I imagine that it is that at least long-term to there.

Danielle: Yeah, like if she wants to after that, it’s her choice. Like I’m not going to say, “No. You have to do this,” when she gets older.

Jeanne: Right, but they’re going to call her, because they’re going to wait for when she’s supposed to go through puberty, we have to see if puberty happens for her or if she has a growth hormone problem.

So, if we had to be at [HOSPITAL] and I had to deal with stupid conversations and all that stuff, I was in the right place, because he had done the preliminary research years and years ago, to determine what was working for the kids with Down’s syndrome. So, again, just like I'm doing the study with you guys, I could have said no, and she probably would have had a very similar treatment plan because it was what he had figured out was what they were using. But to sign up to give my information to him to continue to work and confirm that, by all means I'm going to help him do that. Because he found the protocol that's probably saved my daughter. So, he can certainly take all the data he wants from me. So, again, the study wasn't so much a trial, I think, as it was more a follow-up kind of thing—I'm probably using the wrong word.