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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Dr. Green:
My advice to that young girl is if you want to do it, you can do it. And the fact that it's been done proves to you that if you really want it, you can have it.
The road to get there is different for everybody. Some have to work a little harder, a little longer. The challenges are different, but it is definitely possible.
Jeremy Holden:
Hello, everyone. And welcome to Connecting ALS. I am your host, Jeremy Holden. March is Women's History Month, an opportunity for us to reflect on and celebrate the role that women have played in American history.
And to do that, this week we are taking the opportunity to reflect back on some of the women fighting on the front lines in the fight against ALS, by revisiting conversations we had on the show with doctors Erica Green and Sandrine da Cruz. Dr. Green, thanks so much for being with us on Connecting ALS today.
Dr. Green:
Thank you so much. It's my pleasure to join you today.
Jeremy Holden:
We really appreciate you taking the time. And we have a bunch of questions for you. But before we do that, can you give our listeners a little background on yourself and your connection to ALS research?
Dr. Green:
Sure. I am actually a Houston native. Went to school, residency, medical school in Houston and always loved neurology, which is the specialty that cares for patients with ALS and like diseases.
But it wasn't until I did my residency under my then and current mentor Stan Appel that I really developed a commitment to research and to care for ALS patients.
He has been the director for one of the largest multidisciplinary clinics in our nation, and still serves as a mentor for many. So really just coming in contact with the patients under his care.
And I think the first thing that impressed me as a resident, a doctor-in-training, was that although these patients were given, at the time, a very dire diagnosis with not as many treatment options, compared to other diseases at the time, they were the ones that would often encourage us, the residents and Dr. Appel.
They had a fight about them. They were just amazing people. They are. And often, anyone who takes care of ALS patients will tell you the same. They are the nicest people, the salt of the earth. And so started from there.
Speaker 3:
Well, it's really noble work that you do. And I think Jeremy and I would agree, there are so many inspiring stories throughout the world of ALS and it's...
Those living with a disease and their families will attest to, it's important to have the right doctor and the right care team on your side. And it sounds like, from everything we've heard about you, Dr. Green, that is the case there in Houston.
Dr. Green:
Thank you.
Speaker 3:
The main topic we want to discuss with you today is the day being celebrated around the world on Thursday, February 11th. It's the International Day of Women and Girls in Science, which calls on all of us to defy gender biases and eliminate the discrimination that holds back women and girls in the fields of science, technology, engineering, and mathematics.
According to stats compiled by the United Nations, at this time last year less than 30% of researchers around the world were women. And only a third of all female students selected a STEM-related field in higher education. In your opinion, Dr. Green, what are the biggest barriers to entry that still exist for women and girls in science?
Dr. Green:
Well, thank you for asking me the question. I think, first of all, it starts with women and girls early on are still convinced to believe that that's not their gift. That they do not have a proclivity for the sciences or technology.
And so I think there have been plenty of studies, and I think it's still today, that in terms of gender bias, young girls are taught to be students of the arts, liberal arts and English and those things.
Whereas in science, male students and male children are more pushed and supported in that direction. And often, it sets up this thinking that, "I'm just not good at math," or, "I'm just not good at science."
And so I think that still is the issue today. Although hopefully, as a few more women get into these fields and young girls start seeing role models, it becomes more of a reality.
I also think that that's the second point, that we are still lacking sufficient number of role models. It's slowly changing, but still there's a huge gap. And I can tell my own story, I'll be honest with you.
And I tell my residents and medical students this story that when you're eight years old and people ask you what you're going to be, I think everyone says doctor, lawyer, fire chief, what have you.
And then I was no different. The thing you say is a doctor, not really knowing what that meant. But my mother's youngest brother, who was the first to go beyond college, went to medical school.
And he would come home on the weekends. And he became engaged to a beautiful woman. And she would come to visit him sometimes on a Sunday. And I remember thinking as a little girl, "Wow. She's a doctor?"
She was funny and tall and beautiful, and she looked nothing like the doctors that I had seen as a child. And I remember thinking to myself, "That's what a doctor looks like."
And from that point on, whenever I said I wanted to be a doctor, I thought of Imelda, which was her name. And it was just having someone before me, who looked like me or was like me, that I could picture and imagine myself doing the same thing. And sometimes that's all it takes.
And so I think going back to the second reason is having enough of those role models, whether it's for a second in time or someone who could actually get involved with your journey and mentor you.
Those are the two issues I see. I think there are cultural issues and social issues, obviously. And that we could talk on in detail, but I think from the beginning those are the two major factors.
Jeremy Holden:
Such an important point that you bring up about the role that role models can play, and being able to see people who look like me in the fields that I want to pursue.
You're obviously a very busy professional and doing great work. What are some of the ways that you try to model for the next generation and show that this is a possible path forward for them to pursue?
Dr. Green:
Thinking on that, I think I'd like to consider myself accessible. I think the strongest mentors and role models are those who seem larger than life, but yet they're very accessible.
And so even if you see someone like you, if they're so high up and so distant, either because of their career or their schedule or just their interest, it can be hard to relate. Even if they're the same gender or background.
So the key is to be accessible to those around me, and to the students, the residents, whoever who come to me for a variety of reasons and see that I'm actually normal, that I do have a story. I do have a journey.
I can talk about my passions, my challenges. I can give advice. And the balance of life that comes with being a professional, a mother, a wife, a friend, and all of those. Now a grandmother.
Speaker 3:
Congratulations.
Dr. Green:
Oh, thank you. And so that's number one. And then as a role model, being a role model who deserves to be a role model. It's holding yourself accountable, and leading yourself, and teaching them how to do the same.
And how to problem solve and have a growth mindset, resilience, and grit that I think the younger generation needs to learn. And it needs to be modeled for them.
Speaker 3:
We've been talking about participation and access for women and girls in STEM fields. But pay is, of course, a problem as well with women employed in these fields making an average of about 20% less than their male counterparts on an annual basis. Is the compensation gap, the pay gap, something that you witnessed in your field as well, doctor?
Dr. Green:
I have. It was not anything that I was honestly focused on because I went... After residency, I did research in the lab, and there are funding mechanisms that... Right now, funding mechanisms at that level aren't specific to gender.
But once you get out and you begin to practice, you come to the conclusion that maybe there is inequity. Even in a situation where you feel supported, there is inequity.
And yes, it is not desirable. It's not specific to research, it's just specific to the profession, and many professions. What I appreciate is that many organizations, including a national organization for neurologists called the American Academy of Neurology, for the past five years has dedicated to creating venues, leadership training, networking for those populations who might be underserved or underrepresented or on the other side of a gap.
Including women, as a way to give us a voice and tools to advocate for ourselves, to negotiate for ourselves. And I think that's been part of it, not really knowing how to speak up, and to negotiate, and to ask, and to justify, and to argue in a professional way what you deserve.
And so even I have had to learn how to not shade into the background, and how to advocate, and ask, and justify what you deserve and what you need.
Partly it's the system. There's no doubt. You would hope that the system would be fair without having to be told, without having to be penalized or supervised.
But on the other hand, it also reflects the culture of many women where we've not really been told how or encouraged to be an advocate for ourselves. And so it's not as clear cut as this is just a system issue, it's an intrinsic issue that women and girls...
That needs to be role modeled, that needs to be taught. We need to go back to those younger than us who are coming up behind us and saying, "This is how you stand up for yourself. This is how you negotiate. This is how you assert yourself professionally," and shorten that gap.
Jeremy Holden:
Have you seen changes in the course of your career, in the recruitment effort to try and address this issue and reach out to more women and girls? And make sure that those opportunities are available, and that those recruitment efforts are underway? What are you seeing there?
Dr. Green:
In my small microcosm, I can't say I've seen a huge effort. I'll be honest with you. Do I see women in leading clinical and research in administrative positions more and more? I do. More so than what I did 10 years ago, maybe 20 years ago.
But am I aware of programs that are addressing that? In my institution, not so much. But to be fair, I'm not necessarily directly involved with those initiatives currently.
I am involved in medical student education as well, at Houston Methodist. There's an engineering medical school branch. And I think the emphasis on implicit bias and gender and race equity is being taught at the student level.
I'm not really seeing it at the doctor-in-training or resident level to the same degree. And definitely not in the postgraduate faculty, physician, employee level. That's where it's missing. We're beginning to teach it, but I'm not sure we're doing it.
Jeremy Holden:
Right.
Dr. Green:
Yeah. Yeah.
Speaker 3:
Is it a topic of conversation that comes up amongst your female colleagues in the field? We are fortunate, I think, in ALS research to have so many great female role models in ALS research, many of whom the association is tied directly to. Do you have those conversations candidly and say, are there things that we could be doing or steps that we should be supporting in this way?
Dr. Green:
I've had those conversations with others in our field. From Lori Gutmann, who's a close professional friend of mine. COVID has separated us a little bit but yes, I've had those conversations.
And I think what we've all said is that once we get to a place, it's our responsibility to open up the path, widen the path for those behind us. It's really been more of an individualized commitment to finding that path for other females who are seeking to get to our position. And so that's really been the conversation.
And then getting involved in those leadership programs that are now being offered across many organizations, whether it's the AA, the American Association of Medical Colleges or specialty specific organizations like neurology where they're now taking the lead and trying to provide a way for women and other underrepresented groups to network to improve recruitment, improve retention.
There are now task force and committees that have been put in place. And I do serve on one through my organization, the American Academy of Neurology, where there's an effort in how do we increase interest and recruitment, even starting at the high school level.
So it's starting to take form, as I think about it. It's starting to take form. And more so than what I've ever seen. It's so intentional. And I'll be honest with you, I was unaware that there was an International Women in Science Day on February 11th until this year. I don't know how long we've had that day, but that tells you that something already, doesn't it?
Jeremy Holden:
Yep.
Dr. Green:
We're starting to see the signal, just by having this conversation.
Jeremy Holden:
Reflecting on those high school students that you talked about, or thinking about the eight-year-old girl today who tells people that she wants to be a doctor when she grows up. What message do you have to encourage that generation to pursue those dreams?
Dr. Green:
Simply, "You can do it. You can absolutely be a doctor. You can be a scientist. You can run a lab. You can run a department. You can do this. And if I can do it, you can do it." That's all they need to know.
All they need to know is that someone has walked the path and they've gotten to that place. That's all it takes. The question that, "You can't do that," or, "Maybe that's not for you. Maybe that's not your strong suit," those statements and those perceptions of us are not necessarily the truth.
The issue is that whether you're a male or a female or whatever race or orientation, we've all heard statements that tell us that we're this or that. The issue is we believe them.
And what I would say to that eight-year-old young girl is, "If this is what's in your heart to do, then do it." Because nine times out of 10, that statement is wrong if you put your nose to the grindstone and you go for what you want.
And there are so many examples of that in medicine, in technology, among women and men in other fields as well as well. And at first, initially I wanted to do neurosurgery before neurology.
And I went to the chair at the time at my school. Very nice man and quite respected. And I was serious. I didn't see any female neurosurgeons and not any black ones. And he was very kind. And he said, "Well, I have this many children, and I can tell you I barely raised them. And I just don't think this field is for you."
And because I respected him, and I do... I still do. I think he's retired. He wasn't trying to be... I don't think he was intentionally trying to diminish my dreams that he placed his perceptions on me. Right?
Jeremy Holden:
Sure.
Dr. Green:
And as a young person, you trust those people you respect and you trust their perception of you. Now, I don't regret the position and where I am, but now I see examples of other females as neurosurgeons.
I see females in our neurosurgery program, and over here. And I've seen black females complete, and Latin-American females. And I'm like, "Then I could have done that." You see?
So I think my advice to that young girl is, "If you want to do it, you can do it. And the fact that it's been done proves to you that if you really want it, you can have it." The road to get there is different for everybody. Some have to work a little harder, a little longer. The challenges are different, but it is definitely possible.
Speaker 3:
That is an inspiring, powerful message. Thank you for that, doctor and for being among those that are setting examples for women and girls coming up in scientific fields today.
Before we let you go, we do want to ask you about your ALS research. We know that you've been involved in a number of trials and published so many articles over the years. Is there anything that you're working on or tied to now that you can tell us about, in terms of progress in ALS research?
Dr. Green:
Well, I think we're so excited about the number of therapies that have come up in the past five to seven years for ALS. And our site has been involved. I've served as a primary investigator with my colleagues on...
There's a new drug, Masitinib, which was approved in Europe. And we're excited to be a part of that, as well as c9orf studies that are coming through for patients who have an inherited form or a genetic mutation associated ALS.
And so we've been involved in a number of trials over the years, most of which have not worked. But to be in an era where we can participate in the ALS Healey trial with Dr. Sarah Paganoni... So we are a site for that.
This is an exciting time because now we've learned the process of evaluating and testing a number of drugs all at the same time, without the lull of starting over.
So I foresee that in addition to Radicava, in addition to Nuedexta, that in the next one to three years we're going to have another, if not two more drugs in the pipeline to be FDA-approved, that are directed at different mechanisms, but all working together to slow progression.
Radicava was the first FDA-approved drug that was directed at the disease versus the symptoms since Riluzole. And Riluzole, I think, was FDA-approved in 1996 or in the mid-1990s. And so that was an exciting time because we found a drug that slowed progression.
I believe that we're going to go even further, and I think I'm very excited about the ALS Healey trial platform because that has provided a study design that allows us to study many drugs and not lose ground.
And I think that's always been a delay, is that the funding, the time, the recruitment... We start a study, then it takes a while to start another study. And this way, we can study really plausible drugs in a rapid way. So very exciting time.
Speaker 3:
That's great. That's great. Well, we feel really fortunate to have gotten to speak with you, doctor. It was a thoughtful conversation.
Dr. Green:
Thank you. Pleasure was mine.
Speaker 3:
Thanks again to Dr. Green for sharing her thoughts and experiences. We're going to keep things moving and go right into our conversation with Dr. Sandrine Da Cruz.
We're on the line today with Dr. Sandrine Da Cruz from the University of Leuven at VIB in Belgium. Dr. Da Cruz, thanks so much for being with us on Connecting ALS today.
Dr. Da Cruz:
Thank you for having me. It's a pleasure to be here.
Jeremy Holden:
We really appreciate you taking the time to join us, and we have much to discuss. But before we get into all of it, doctor, because I'm sure some of our listeners are curious to know more about you, can you give us a little background on yourself? As well as your connection to ALS research?
Dr. Da Cruz:
Of course. So I actually am, I guess, multi-ethnic person. So I was born in France and did my studies there, my undergraduate students there. But my parents actually from Portugal, so already two different nations.
And then went to Switzerland where I did my PhD on what helps us with the powerhouse of our cells, mitochondria, and really understanding fundamental mechanisms of mitochondria.
And that's what got me into ALS because early on, we saw that mitochondria were not functioning properly in disease, in this devastating motor neurone disease: ALS, amyotrophic lateral sclerosis.
And since I really wanted to work on a neurodegenerative disease to really try to understand and help patients with devastating disease, I went to California, to UCSD, to do my postdoc with Dr. Don Cleveland, who has, of course, been working... Very well-known in ALS.
And this is how I got started in ALS quite a few years ago. And really right at the start, I was very fortunate because I was awarded by the ALS Association with the fellowship, the Milton Safenowitz Fellowship, back in 2007.
And this was really my early introduction to ALS and to the ALS community, which I was really grateful for because that enabled quite a bit in my young career at that time.
Speaker 3:
Sure. And what brought you to Belgium?
Dr. Da Cruz:
My European background, obviously as well. So I spent quite a few years, about 14 years in San Diego, and about a year ago with the family. We decided to move back to Europe, and we found this great place in Belgium, in Leuven, where I'm actually now.
Also have my lab at the VIB Center for Brain and Disease Research at University of KU-Leuven, about a year ago. Still working obviously on understanding what's causing disease and with the ultimate goal, of course, for helping and developing therapy.
Speaker 3:
Well, we really appreciate your work in the field, doctor. And we will likely ask you more about your research in a bit. But the main topic we want to discuss with you today is the day being celebrated around the world on February 11th, International Day of Women and Girls in Science, which calls on all of us to defy gender biases and eliminate the discrimination that holds back women and girls in the fields of science, technology, engineering, and mathematics.
According to stats compiled by the United Nations at this time last year, less than 30% of researchers around the world were women. And only a third of all female students selected a STEM or related field in higher education. In your opinion, Dr. Da Cruz, what are the biggest barriers to entry at the moment for women and girls in STEM fields?
Dr. Da Cruz:
Quite a bit of progress has been made throughout the years, especially since back when I started and now. But much more needs to be done, and it's really up to us to make sure that we encourage as much as possible, parity, I guess, in everything we do.
I think it's still important that all of us, at every single level, we keep that in mind. And especially in the young generation. I think it starts back in the youngster, the level of elementary school even, and encouraging as much as possible having access to these STEM programs. I think this is key.
There's quite a few initiatives out there, but I think promoting more and more of those is really important. I can see it myself with my own daughter, how enthusiastic she has been when she got into this robotic program back in San Diego when she was still in third, fourth grade.
And I think this is really important. Accessible to all schools, throughout all the communities as much as possible. I think this is something that is still missing, and that we need to encourage
Jeremy Holden:
Dr. Da Cruz, in addition to encouragement and opportunity. I think about the role that role models play. Can you talk a little bit about some of the role models you had growing up, and the role of just having that imagery of, "This is a field that is open to me. A path that's open to me." What role does that play at a young age, triggering some of those thoughts of, "This is a potential path that I can go down"?
Dr. Da Cruz:
Yeah. It's exactly true what you're saying, having more of these role models and going to... Us as women and scientists or whatever background, whatever technology and other engineer, it's important that we go back to school and give our examples, what we've done and how...
Just by example, say how it is possible we can get there. And I think that's really important to convey that message. For me, actually, I grew up in a family where actually I'm the first one in my family who went to the university, who did a PhD.
And so of course, as a woman and just as a person, I'm very thankful for my family because that was not really part of... My parents in particular, that was really not in our culture.
And so I think just that already, I hope by going out there and explaining that it is possible, even from someone who around me, nobody could ever follow that path that it is absolutely possible.
Speaker 3:
Clearly you are setting an example, doctor. Neither Jeremy nor I have the necessary skills or brain power to be in a scientific field, which is why we ended up in communication. But one thing we often discuss is messaging, and how we communicate about these fields is important.
Going back to that UN data again, a recent global gender bias study showed that in digital ads for STEM related jobs, only 12% of the onscreen characters were represented by women. Do you feel, doctor, that when these jobs are being advertised and recruited for and discussed, that the focus remains on men, in most cases?
Dr. Da Cruz:
Well, I think we're still behind. I think really, again, a lot of effort is being put out there, but clearly it's not enough. And that's why those numbers are still so low, and it's not enough.
And we are still far behind from having fully parity, I guess, between men and women. Not just jobs out there, but even at the end of the paycheck, there's still this bias against us as women.
In principle, we should all have equal based on experience. And of course, one could always start saying, "Well, but..." We could always come up with some examples where justifying why a man, in theory, could or should be paid higher. But in reality, it should not be the case.
And so clearly, there's still quite a lot of work that needs to be done. Efforts are being made, actually when we recruit. At every single level, at the level of PhD students, post-doctoral fellows or [inaudible 00:30:21] faculty. Now trying as much as possible to make sure that we are no longer back to that ancient model, I would say. But yeah, clearly we are not there yet.
Speaker 3:
A lot of work to be done on that front, to be sure. Dr. Da Cruz, you mentioned earlier your affiliation with the Safenowitz Fellowship. And I know that Dr. Jill Yersak and the team over there are very proud of the fact that so many of those fellows go on to open up their own labs.
Can you talk to us a little bit about the work that your lab is doing these days? What are you focused on? Walk us through some of the exciting research that you're conducting.
Dr. Da Cruz:
Sure. Yeah. So I mentioned, I really started back in... Actually, I joined Don Cleveland's lab back in 2006. And 2007, I believe, is when I received my fellowship, the Milton Safenowitz. Really studying mechanisms of underlying neurotoxicity in ALS.
And since then, that's what now as an independent also continuing those efforts. Later on, actually, I've been really, really fortunate to have support from the ALS Association, later on as independent also with the Ice Bucket Challenge funding for my own research.
And really focusing on what's causing one of the earliest hallmarks in disease, which is leading to muscle paralysis and the loss of those key connections between the motor neurones and the muscles called the neuromuscular junctions.
And this is really what my lab has been focusing on, trying to understand who are the molecular players that actually, during adulthood, are maintaining those neuromuscular junctions. And importantly, why in ALS those are progressively lost, and that lead to obviously paralysis and ultimately fatal paralysis.
And so that's one of the main focuses of the lab, trying to understand and of course, to identify molecules that will reduce this muscle that we call muscle denervation or loss of those contacts, or will promote or stimulate back these junctions, if possible. So this is a major area of investigation in my lab.
Jeremy Holden:
Dr. Da Cruz, before we let you go, what message would you have...? Just thinking back, reflecting back on International Day of Women and Girls in Science, what message do you have for women and girls who are considering a career or an academic pursuit in science?
Dr. Da Cruz:
I think it's always very important to always believe in ourselves. Never doubt. And of course, with passion and perseverance, believe that we can achieve our dreams.
For me, it's true that I was able to do so. Early on, I knew I wanted to work in this field. I worked hard, but also I was very fortunate to be surrounded by people who helped me. My mentors, for example.
And one of them, Don Cleveland, has been really, really key there. Especially in this field where it's quite impressive to see actually how post-doctoral fellow, how many from his trainees actually became independent in research and academia or industry. Doesn't matter.
But gave really the support needed, and in particular for women. And I think this is really an important model to have. And having support from those amazing people also helps, certainly. But again, believing in yourself also and never give up.
Speaker 3:
Thank you so much for your time, Dr. Da Cruz. For your critical work in ALS research and for setting such a strong example from which we can all learn, as we try to bring more women and girls into science and technology.
Dr. Da Cruz:
And thank you very much for having me. It was a pleasure really to be here today with you.
Jeremy Holden:
I hope you enjoyed looking back on our conversations with Dr. Erica Green and Dr. Sandrine Da Cruz. If you liked this episode, share it with a friend. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners.
Our production partner for this series is CitizenRacecar. Post-Production by Alex Brower. Production management by Gabriella [inaudible 00:34:55], supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.