Episode Transcript
Speaker 0 00:00:00 Hello and welcome. I'm here to provide acknowledgement of country. For those who don't know me, I'm kj Karen Jackson, director of Moon Dani Balletic. My genealogy tracks back to Moira Lakes in Barma Forest and Mount Hope in Pyramid Hill. Giving me my connections to Yorta, Yorta, and Barra language groups. There's a couple of things I'd like you to take away from my acknowledgement. The first is to remember the hidden history of Aboriginal people since invasion, our loss of language removal from country, and our new extinction from massacres and pandemics. The second is our strong and inherent connection to community and country. These connections have given us the resilience and courage to rebuild our languages, gain access to country, regenerate our cultural practices in acknowledging the traditional owners of the country on which you are now on. I'd like to sincerely thank them for their generosity and kindness in welcoming people onto their lands. Lands never seeded and lands that run deep into their being and spirit. I wish to pay my deep respect to the ancestors, elders, communities, and families of the rung wri on whose land I stand and who create connection and share knowledge with all of us. Thank you.
Speaker 2 00:01:18 It's an absolute delight to be here with Emma Belka, who is one of our fantastic colleagues here at vu. I want to first though, thank again the acknowledgement and welcome to country that we've heard, and to mention that this is part of a very special podcast for International Women's Day. And its theme this year is marching forwards for all women and and girls. And the maxim is embedded in everything we do. So we have a very, very interesting embedded partnership with our watch. For example, a national leader in the prevention of gender-based violence. We have researchers who are devoted to this every day of the week. And we also have incredible researchers doing work on behalf of society of whom Emma is Absolutely one. Welcome, Emma.
Speaker 3 00:01:57 Thank you, Adam. I'm so pleased to be here talking with you today.
Speaker 2 00:02:00 Now listen, we have met before in different circumstances, but not to talk about your research in this kind of way. Tell us, because we have a general audience here a little more, what is your area of research and how does it help the world?
Speaker 3 00:02:12 Okay. Well, my area of research is in rare neuromuscular diseases. And even though the names has, includes the word rare in it, there's actually quite a lot of different neuromuscular diseases. So it actually, the diseases impact a lot of people. So the two that I'm really concerned with are Duchenne muscular dystrophy, a bit more of a common rare disease, still rare, but also more recently a DSS one myopathy. Right, right. So that's my new baby.
Speaker 2 00:02:41 Okay. And did you just stumble upon this through the prior research or how did it come to be? Yeah,
Speaker 3 00:02:46 Look, it really evolved. I was contacted by two parents with kids that were recently diagnosed with A DSS arm myopathy about two years ago. Yeah. So the disease is really a very new rare disease. It was only discovered in 2016. So these parents very quickly realized there were no medicines on the horizon for their children. So they formulated a rare disease organization to try, try to raise awareness for the disease, but also to try and get researchers on board to start studying and working out what was going on with this disease and looking toward medicine's development for it, which is where I came in. Yeah. Because I was, I was working on a drug that could be very valuable for treating this disease.
Speaker 2 00:03:27 So what an incredible, coming together, the work that you were doing actually came into the light of people who needed it. Yeah. At that time, can you remember the moment when you met them and had this discussion?
Speaker 3 00:03:38 Yeah, so we had a zoom meeting, which right. Much like this was very nerve wracking. Yeah. Don't worry. And they told me all about their diagnosis and I mean, I'm a mom of four. Yes. And I've always felt very privileged that I'm fortunate enough, at least at this stage, to have four very healthy children. But as a mom, I guess I approach it from a unique perspective. I put myself in the shoes of those parents. I would want somebody like me researching these diseases. I would wanna know that there are people out there in the world trying to find medicines to help my children. And it must be so devastating when you get a diagnosis like this and you realize that there are none. There is no one looking for a medicine. So I was immediately struck by their plight. And together we really, I mean, they connected me with some great people working at Harvard overseas in Europe. They'd, they'd already sort of started connecting people and we started applying for grants. Hmm. And you know, for the first year or so, we were unsuccessful. But that was really just us working on something that was about to come to fruition. Because recently we were successful with some major funding, both here in Australia and in the States. Yep. And now we think that medicine in development is on the horizon.
Speaker 2 00:04:50 That is so exciting. I mean, I was aware of some of this through what they call the National Health and Medical Research Council. And those are, for those who don't know, very difficult and competitive grants to get. Do you know approximately what percentage of grants are successful?
Speaker 3 00:05:06 I think in this round, just go on 2024 to start. 2025. Something like 6.7%. I might be slightly off on the point.
Speaker 2 00:05:14 Yeah. But pretty close to that. Yeah. So just think of all those 93 or 4% of unsuccessful wonderful projects and think of how special it is to be one of those who is successful. I mean, it's really, I, all I can say is that we are so thrilled for you and your colleagues. How many of you are involved in this?
Speaker 3 00:05:32 So in my grant here at vu, there's myself and my longtime colleague, Dr. Carra, Tim Panny, and she's a senior research fellow within the Institute of Health and Sport as well. So we've been working together. I mean, Carra came to me as a VU student, as a re a third year research student. And we really hit it off. And she was such a hard worker and such a smart girl. And I just kept her held onto her title. We did honors, she did her PhD with me. We work really well together. She has special talents that I don't have, like fact checking, cross-checking, all of those things. And I'm quite a writer. Yes. So I think we just work really well together. So she's the CIB on the grant. Yep. And the other collaborators are based at Harvard and at the University of Washington. And with a patient organization Cure a dssl one, which works out of la.
Speaker 2 00:06:22 Wow. So it's three different American sites. So for those who don't know if it's a, A, a chief investigator, you know, A or B, you know, on the team that's still very much a part of the team. But there's lead investigators, if you like, often who are professors. By the way, I should say that you recently became a professor.
Speaker 3 00:06:36 I did. Thank you, Adam. Yes. Oh,
Speaker 2 00:06:38 That's okay. It wasn't, it was a wasn't, I mean it could have been a personal choice, but it was actually a committee that chose unanimously. I can say too. And we really like to recognize, I mean, it wasn't even before we knew all the results of all the grants, but it's just the talent that you've exhibited over many years has been just outstanding. Can I talk about this many years? 'cause I've only been here just over four and I was looking at the record, I think you've been at VU something like 22 or 23 years in total, but you didn't always do what you're doing now. So can you wind us, like wind back a bit for us and give us the history of your time with this wonderful institution? Sure.
Speaker 3 00:07:12 I started at VU as a student. I'm not sure if you read that in my promotion application. Oh yeah. But yeah, I did my bachelor of biomedical science degree here and I came to vu, I guess by a bit of a different pathway to some other people. So I had a child when I was teenager. Mm. My beautiful son, Zach, who's now 26. Yeah, I'm 28, gosh, 28. And he, you know, he, having him really inspired me to go to university. My parents were obviously very supportive for me to continue my education. And so they've helped me out tremendously. But I really knew I wanted to get into medicine. So I came to VU in the Bachelor of biomedical sciences. Loved it. Thought I'd end up being a doctor, but realized that that was gonna be pretty tricky with a young child. So I went into the research arm.
Speaker 3 00:07:58 Yeah. But actually at the end tail end of my PhD, landed an academic position here. And I think that's a little bit of a flip flop to how medical researchers would normally go through their career. Normally they would start in research and then progress on to academia sort of toward the end of their career. So it was really challenging for me to get partway through my career in academia and realize actually I really wanna make a goal of this medical research. So I really had to work very hard to increase my track record to start applying for grants to be competitive for grants. And I have somehow managed to make that work. Oh,
Speaker 2 00:08:33 Oh,
Speaker 3 00:08:33 That's fantastic. With having another three children in the meantime and all of those extra goodies. So,
Speaker 2 00:08:38 And do the, do the children aren't, do they take an active interest in the research that you're doing?
Speaker 3 00:08:42 Yeah, no. So I have, I have a teenager now who has, you know, I've talked to her about the rare disease I'm working on and our families will get to meet. So I've met the two children who have a DSS one myopathy last year. They will meet my children this year. So, you know, I, I'm pleased to call them friends now. Yeah. So my kids are interested to some extent, but then they also just don't wanna know some aspects of it as well. Yeah. I think they're proud of me though. Oh, I think
Speaker 2 00:09:09 I, they must be. It's just families often don't really appreciate everything that goes on inside the walls of the university, even when you visit, but there's so much work. Mm. And it's really week around. It's not just Monday to Friday, like when you're doing experiments. It could be anytime. Yeah. So didn't you have things that were bubbling along over the, you know, Christmas so-called break as well?
Speaker 3 00:09:28 Yeah, look, I mean the kids are used to, mummy going to work on the weekends sometimes when there's experiments that need running. Yeah, yeah. Look, I have had things bubbling in the background over the holidays. So as part of this grant, we're actually working on starting clinical trial in the States. So we're filing what's called a, a investigational new drug application to the US FDA. Right. So we've been working quite heavily on that, but also trying to do some of the background experiments to prove that the drug is safe to be applied in humans over the long term. And particularly in the context of this disease. So always what's going on. It is not a nine to five job. No, it is not a Monday to Friday job. Yeah. But I think once you accept that and you know your family and your friends can accept that. Yeah. I think that, you know, that's okay. It's, it's
Speaker 2 00:10:15 Good. It's fine. It's really a collective achievement, isn't it? I think that's fantastic. And also even just the time difference, you know, for connecting with people in North America. I mean, I'm familiar with that myself and you know, you just make it work, as you say, but it's amazing how much better it is than what it used to be. You know, it's certainly very intense, but Good. So let me just ask here, you are passionate about medical research and innovation. Victoria University could not be more proud of you. What is next after this, do you think, if this, if this comes, comes off and it sounds like it might, what would happen? Like, would it become a worldwide innovation?
Speaker 3 00:10:49 Well, if I go into my dreams now. Yeah. Just
Speaker 2 00:10:51 Wondering what
Speaker 3 00:10:52 Your dream is. So we're really hoping that the U-S-A-F-D-A will approve the IND filing so that we can start a clinical trial, which we're hoping will happen this year in rare diseases. We can't operate classical clinical trials with lots of patients. We more move toward sort of patient specific clinical trials. So n of one or two clinical trials. And that's what we're going for in this context. Right. But this disease ac, actually there's, there's a few patients in America, but it predominantly affects people in, in southeastern Asian countries. So Korea, Japan, India. What I'm really hoping is that here in Australia, I'm thinking we're quite well placed that we could potentially run a site that would include Indian participants. So ah, right. That's what we're sort of now looking toward. Obviously we'll get our pilot data in this N of one to two clinical trial running outta the states. But then hopefully we can apply for bigger grants to treat more patients if the drug is successful. Of course, by accessing Yeah. Patients sort of closer to the Australian.
Speaker 2 00:11:53 Interesting. Because you could certainly in that sense have Australian migrants from India or other countries that you mentioned as first stage opportunities. And perhaps it may be in familial links to the country, I'll call it, of origin, but you know what I mean, the familial country. That's a really fascinating idea because there, the west of Melbourne itself has so many different national groups represented. It actually makes a lot of sense. Yeah,
Speaker 3 00:12:16 Yeah. Correct. And you know, even with the for known USA patients, they are from Indian descent. Interesting. So you're so right. Migration spreads, you know, diseases that are uniquely, I guess prone to specific populations throughout the world. The problem with this disease is diagnostics, right? So it can be a very long diagnostic journey in countries that don't have medical systems as good as ours. And it can be an even longer one because we just don't have access to these diagnostic gene panels. So that's one thing that we're working with a foundation to try to, I guess, improve across the world, is diagnosis. And we think that we will then find many, many more patients and they will, we'll be spreading country into countries like Australia.
Speaker 2 00:12:56 That is phenomenal. That's something I'd really love to have you come and speak with our university council about someday, because they're very orientated towards saying, what can we do both in the backyard, the front yard, and the world. And this sounds like one of those classic opportunities where it relies upon the backyard to do the world and to do it really well. Fascinating. Hadn't appreciated that till
Speaker 3 00:13:17 Today. That's how we sold it in the N-H-M-R-C grant. Oh, I
Speaker 2 00:13:19 Don't know. I don't, I wasn't there. I just guessing. But having read a a bit about what you did, so, and the final thing I was gonna ask you about International Women's Day and the theme, you know, about building careers for women and girls, you're doing it with your collaborators, you're doing it with your family and you're doing with others. Do you feel that we're doing, you know, enough to inspire the next generation of people, of women in the in study and, and in careers? There's more we could do.
Speaker 3 00:13:42 I thought about this song in hard and I've been fortunate to have some really excellent female mentors. One in the setting of academia who really pushed me to go for the professor promotion when I didn't really think I was ready. Yeah. And another in, and and that was Professor Kathy Tanaka who's here at vu. Yeah. And the other was one who I remember having a coffee with her one day and, and I didn't think I was capable of writing a successful N-H-M-R-C ideas grant. And she said to me, yes you are. You can do this. And she contacted me just the other day actually her, yeah, she's an old professor here, associate professor Kerry Dixon. She's now retired. But she was instrumental in giving me that courage and that confidence to give it a go. So I think back to your question, I think the more women that we see in these settings, the more professors that we can give young women, early career researchers access to, I think females inspire females to be brave and to have that confidence to strive for something that we don't necessarily always think we deserve or that we are ready for.
Speaker 3 00:14:45 So I think that, yeah, I think we're doing great here at vu. There's lots of help and support for females to thrive in research. Yeah. I know that I've been able to access both money and time coming back from my maternity leave to reestablish my research, which has really been instrumental in enabling me to have the additional three children I've had since Wow.
Speaker 2 00:15:06 And such a, a fantastic thing. Look, what I love about these podcasts is, and just in a brief period of 15 to 20 minutes, you learn things you didn't know, but things that really inspire you about what is possible in a place of learning that really cares. Not only do you care, but you're really getting on with finding solutions. I think it's a marvelous thing. All I can say on behalf of all of us is we really are so grateful to you for your inspiration, but actually for your sheer hard work. And also thank you to everyone who's assisted you and you them.
Speaker 3 00:15:34 Thank you, Adam. Yeah, thank you so much. It's great.
