Two scientists reflect on International Women's Day and research into MND

Published: March 2020

"For me, International Women’s Day is about reflecting on and being inspired by the amazing research that women do, how far the field of MND research has come, still has to go and hope that my achievements will inspire other women to follow." Dr Kelly Williams, Macquarie University (left).

Working as a researcher in motor neurone disease (MND) can be a rewarding, but challenging experience.

Many women have led important research breakthroughs in understanding MND, and potential avenues in its treatment, while managing the difficult uncertainty of securing research funding, and building an academic career.

Researching MND can also become much harder due to broader social issues, like the gap in pay between women and men, and the challenge of creating more inclusive workplaces.

Despite the pitfalls and pressures, the work of women researching MND is a rich culmination of intelligence, skill and unwavering determination. Women researching MND have changed and improved our understanding of the disease.

To help mark International Women's Day, we asked Dr Kelly Williams, Macquarie University, and Isabella Lambert-Smith, University of Wollongong and Macquarie University, who are two MND researchers at different stages of their careers, about their work and what this day means to them.

Dr Williams leads the Genomics & Bioinformatics research team in the Macquarie University Centre for MND Research. Isabella Lambert-Smith is in the final stages of her PhD, in which she studied protein homeostasis dysfunction in MND at the Illawarra Health and Medical Research Institute, University of Wollongong.

Lambert-Smith and Dr Williams told us about who they admire, their motivations and what might help more women to research ways of trying to stop MND.

Isabella Lambert-Smith, Illawarra Health and Medical Research Institute, University of Wollongong.

 

"I think that in the MND research sector, particularly in Australia, we have come a long way in establishing equality for female MND researchers." Isabella Lambert-Smith, University of Wollongong & Macquarie University (above).

Why did you choose to work in motor neurone disease (MND) research?

Dr Williams

After completing my undergraduate degree at Macquarie University, I discovered that my love of genetics and passion for human health could align in medical research. Little did I know that I would dedicate the next 13 years of my career to MND genetics research.

I was fortunate to get my first job after university working at the ANZAC Research Institute in a neurogenetics group focussing on gene discovery in familial MND. Within 2 years our small genetics team of only 2 people, working as part of an international effort, had uncovered mutations causing familial MND in two new genes, TARDBP and FUS, leading to diagnostic tests for MND and the beginning of an exponential increase into MND research worldwide.

As a young scientist, at the time I didn’t fully appreciate the impact of these discoveries and how they would change the course of MND research. Yet I knew that I was making a difference to people living with MND and that inspired me to continue working hard on new, innovative approaches to understand the genetics underlying MND.

Lambert-Smith

Since I was a child I’ve held a fascination for the workings of the brain and the nervous system. My interest in movement disorders really ignited when I was eight, following a very traumatic experience in the birth of one of my cousins. Due to complications in his delivery, he suffered severe brain damage that caused him to develop cerebral palsy.

My family is very close so I spent a lot of time with my cousin as he grew up. It always pained me to know and see the effects of that brain damage, to know that his nervous system is unable to allow him to control his muscles, preventing his ability to speak or walk. I have since held a strong desire to understand how the motor (efferent) division of the nervous system functions.

I’ve also grown up being scientifically (and generally) inspired by my Mum. She’s a microbiologist, and has instilled a great love for science in me – she’s also brought up my brother and I as a single parent, and has been an amazing role model as an independent woman balancing her career with being an extremely supportive, caring and loving mother making her way on her own.

My journey in becoming a motor neurone disease researcher began in the third year of my Bachelor of Science. I was fortunate to attend a guest lecture by Professor Justin Yerbury, in which he covered the established scientific knowledge pertaining to the hallmark features of MND and the history of MND research. I was enthralled. I previously did not know very much at all about MND, and I was equal parts horrified and fascinated (though probably more horrified) as Professor Yerbury enlightened us to the reality of this cruel disease.

At that stage of my degree I was starting to consider what I wanted to do for my Honours research project, and as soon as I learnt of Professor Yerbury’s research I knew I wanted to pursue a research project with him. I feel very grateful to Professor Yerbury for welcoming me into his lab for Honours, and for inviting me to undertake a PhD under his supervision. The rest is history…I’m hooked on continuing in the efforts to find a way to effectively treat this horrific disease.

What does International Women’s Day mean to you, and for MND?

Lambert-Smith

I find International Women’s Day to be a breath of fresh air, a reminder to stop and appreciate my fellow humans who identify as female, and to acknowledge our achievements as well as consider the challenges we still face in achieving true gender equality. In certain sectors, gender inequality is more prevalent and obvious than others; a clear one of these is the research sector, most definitely including STEM.

I think that in the MND research sector, particularly in Australia, we have come a long way in establishing equality for female MND researchers. I know of several male MND researchers who are amazing allies for gender equality in STEM. I’m also extremely heartened by the fact that there are numerous MND research group leaders/chief investigators who are women, and they are absolutely smashing it at their research.

Dr Williams

I grew up with sisters and attended an all-girl’s school so have always been surrounded by successful, strong, high-achieving women. One example comes to mind where I first became aware of a gender inequality in my research field and subsequently felt particularly proud to be recognised as a leading female geneticist. I was attending an International ALS/MND Symposium in the US, and around 20 world leaders in MND genetics research had joined together to discuss a large global MND genomics collaborative project. I was amazed that I was the only female present, and the only researcher under 30 at that meeting.

For me, International Women’s Day is about reflecting on and being inspired by the amazing research that women do, how far the field of MND research has come, still has to go and hope that my achievements will inspire other women to follow.

It's interesting to note that since its inception in 2005, two-thirds of the highly competitive MNDRIA Post-doctoral Research Fellowships have been awarded to women.

Who do you admire?

Dr Williams

It’s hard to pick just one person I admire!

Professor Naomi Wray. An incredibly successful world-leading researcher in statistical genetics, Fellow of the Australian Academy of Science and a mother. Naomi has been a major influence in my life and research career.

Professor Justin Yerbury. I have collaborated with Justin for a decade and his resilience and unwavering dedication to MND research is truly inspiring.

Finally, people living with MND and their families. This continues to drive my passion for MND research. Sometimes, as a scientist you can get so absorbed in your research and data analysis that you can forget the basic reason you are working on MND – to help make a difference in people’s lives.

Lambert-Smith

I admire quite a number of people who’ve made a positive impact in my life!

Most notably, however, I was lucky enough to have three remarkable supervisors throughout my PhD; Professor Justin Yerbury, Associate Professor Darren Saunders and Professor Heath Ecroyd. As well as being brilliant, passionate scientists, each of them are male allies for gender equality in STEM. They speak up about systemic obstacles to the establishment of gender equality in STEM careers.

For instance, I’ve seen them call out gender imbalance in speaker line-ups at conferences, promoting equal representation of female and male scientists presenting on their research. They stand up for and celebrate the brilliance and achievements of their female colleagues, and they’ve instilled in me a strong sense of the value I have as a researcher.

Based on your experience, what have you found to be some of the biggest challenges while working as an MND researcher?

Lambert-Smith

I’m at a very early stage in my career as an MND researcher, finalising revisions on my PhD thesis, and I’m fully aware that I’m yet to face what will be the biggest challenges of my research career.

Nevertheless, thus far one of the biggest challenges I’ve experienced has been a fairly consistent sprinkling of imposter syndrome since I embarked on my PhD journey several years ago. I’ve recently discovered how prevalent imposter syndrome is, and, somewhat ironically, it affects many ambitious, highly driven individuals. It’s an internalised fear of not being cut-out for the work that you’re doing, a pervasive feeling that you haven’t earnt your accomplishments, that your achievements have not resulted from your own skill and hard work, but have come down to good fortune that has come your way. Self-doubt in a nutshell.

However, it’s something that I am working to overcome as there are enough external challenges to be faced in progressing through a career as a researcher, without internal challenges adding to the mix! Another challenge has been the financial instability that, very unfortunately, affects many medical researchers in Australia. This is due to a significant lack of funding available for medical research in this country. As I am still quite young and am working towards establishing myself in the MND research sector, and don’t [yet] have any dependents to provide for, the financial instability has not yet had a significant impact on my career or my life in general.

What it has meant, however, is that at different points over the last few years of my PhD I have needed to pick up other jobs to keep me going, which has diverted my energy and time away from my research. This is common for PhD students, and I daresay one positive outcome is that it’s character-building! But it is also a good recipe for burnout.

Thankfully, I have many wonderful friends, colleagues and a loving family who’ve formed an amazing support network and helped me push through those more challenging times of my PhD. I know this support network will play a huge role in the years to come as I face yet bigger challenges that will be part of my research career.

Dr Williams

Funding (particularly lack thereof) is always an ongoing issue in medical research, however I would consider myself fortunate to have had immense financial support from MNDRIA with a 3-year Post-doctoral Fellowship in 2013 and several Innovator Grants awarded.

I’d say one of the biggest challenges is the mental determination to continue research when at times it doesn’t feel like you are making progress. Medical research is a lengthy process and can be years before a breakthrough is made. Sometimes hypotheses are wrong, sometimes experiments fail. Mentally this is a challenge but I always try to remember what motivates me – to help people living with MND.

Knowing that ANY discovery myself or my research team may make, no matter how small, is important in the big picture of MND research aiming to find an effective treatment.

What excites you most about your current MND research?

Dr Williams

Two of our current research streams are cryptic ancestry in MND cases and finding genetic changes that may contribute to variation in MND clinical presentation. We are optimistic that finding distant relatives will help us uncover more genes that can be used in diagnostic tests and potentially lead to prognostic tests for the clinic. My research team are repurposing “traditional” genetics concepts in an innovative way, and we are working alongside MND genetics research teams from around the world.

Lambert-Smith

In all individuals with MND, the specialised nerve cells that become affected – the motor neurones – accumulate clumps of abnormal proteins. These protein clumps are not observed in healthy motor neurones. Because the protein clumps are associated with the degeneration of motor neurones, we believe that a significant contributor to the development and progression of MND is dysfunction of the ability of motor neurones to regulate and turnover the population of proteins that reside within them.

The maintenance of the regulation of proteins within cells is called protein homeostasis. My MND research is focused on understanding how and why motor neurones lose the ability to maintain protein homeostasis, and how it is linked with the genetic mutations that are detected in people with MND. I’m very excited about where my research is going at the moment as my PhD supervisors and I identified a molecule that our findings have so far shown may play an important role in protein homeostasis dysfunction in a proportion of people with MND. It is still very early days for this work, but I hope we can progress this research towards finding a way to therapeutically address the role that this molecule plays and help the individuals with MND that it affects.

What advice would you give your 15 year old self?

Lambert-Smith

Don’t let yourself lose sight of who you are and what makes you unique. The years to come will challenge you with others projecting their own insecurities onto you. So remember that what others project onto you is a reflection of them, not of who you are. Stay authentic, stay quirky, and stay curious.

Dr Williams

I would tell myself not to stress so much about aiming and achieving so high at the expense of experiencing all the things a teenager should when I wasn’t really sure what I wanted to do after school. My advice would be to work hard, challenge yourself, enjoy life and be confident in your ability to make the right decisions when it is the right time. Wait until you have found something that excites you and inspires you. This will only come from broadening life experience. When you are truly passionate about it you will work hard with a purpose.

If there was one thing you could change to help other women working in MND research, what would it be?

Dr Williams

Funding and job security. Specifically, parental leave scholarships or mid-career MND Researcher Fellowships. After having 2 children in the past three years, I now recognise only too well how challenging balancing family and career is, particularly as a primary carer. Often, taking parental leave means your direct research is put on hold for at least 6-12 months with both short- and long-term consequences. Research outcomes, career path and potential for future funding can suffer immensely as a result of halted research. Parental leave scholarships for continuity of research while on leave, or a Research Fellowship to ensure that women have job security to continue their research, would be an invaluable addition to MND research.

Lambert-Smith

The change I would love to see that I know would help other women working in MND research is the change that is needed universally throughout society; a widespread wake-up call to the conditioning that causes many of us to subconsciously believe that our strengths and capabilities are limited by our biological gender. The knock-on effect of this conditioning certainly does not only impact women; it affects many men too in the way they see themselves and their roles in society.

But in the STEM research sector it is predominantly women who suffer as a result of long-held expectations of differences in what male and female scientists are capable of achieving, and in their ability to reach positions of leadership. We are certainly well on the way towards achieving widespread attitude changes in which more and more people in academia are conscious of the gender gap that still exists.

I know of many male academics who call out gender discrimination and advocate for their female colleagues. And many research institutes and organisations have Equality, Diversity and Inclusion Committees that are creating and progressing initiatives to ensure that equal opportunities are maintained for all individuals. This just needs to keep happening, and by more and more individuals, both men and women. As this progresses it will create the space for more women working in MND research to reach their full potential and progress their research programs without dealing with the obstacles caused by insidious gender discrimination.