Combined 11th Australasian Academy of Cerebral Palsy and Developmental Medicine and the 3rd International Alliance of Academies of Childhood Disability 'Better Together' Conference 2022
Keynote Speakers
More speakers to be announced soon
Prof. Hans Forssberg
Sweden
President IAACD
Neuropaediatrics at Astrid Lindgren Children’s Hospital in Stockholm, Sweden. He is one of the founders of the International Alliance of Academies of Childhood Disability (IAACD; together with Bob Armstrong and Diane Damiano) and has been its first president. He is past chairman of the European Academy of Childhood Disability; past dean and past vice president of Karolinska Institutet; and past member of the Nobel Committee for Physiology or Medicine.
His research has focused on children with neurodevelopmental disorders; from translational research on mechanisms underlying motor and cognitive dysfunctions, to clinical research aiming at developing new methods for assessment and intervention. During recent years, he has shifted focus to research on global health of children with disabilities, in particular in low and middle income countries (LMIC). He has published around 250 original research articles and is one of the internationally most cited researchers in neurodevelopmental disorders (>30 000 citations; h-index=81; Google Scholar). He is presently leading a UNICEF project developing, implementing and evaluating global recommendations for early identification and intervention for children with developmental delay and disability, particularly in LMIC.
Prof. Petra Susan Hüppi is Professor of Paediatrics and Director of the Division of Child Development and Growth at the Geneva University Hospitals, Switzerland. She is currently the Vice-dean of the Medical Faculty of the University of Geneva and member of the board of trustees of the University of Zurich. She also directs the ChildLab at the Campus Biotech of the University of Geneva, Switzerland.
Trained as a clinician in pediatrics, specialist in newborn medicine and developmental pediatrics, her research is focused on the study of the developing brain, the application of magnetic resonance (MR) techniques to relate brain structure and function to the neurodevelopmental outcome of high risk newborns. She has international research activities with a visiting scientist position at Harvard Medical School in Boston, USA. She has directed numerous research projects both at Harvard Medical School and the University of Geneva, aimed at the better understanding of early human brain development both from a nature and nurture perspective. Her research has helped in a major way to understand the specific brain deficits found in prematurely born children, highly relevant for the cognitive and socio-emotional development of children and adolescents.
Her international status is further documented through her various commitments in major scientific societies and organizations. Currently she serves as a Vice president of the European Society for Pediatric Research, is honorary Fellow of the International Society for Magnetic Resonance in Medicine (ISMRM).
In order to join forces to study scientifically both the care and medical interventions on children’s long-term development, she founded the European association for developmental care.
Prof Khandaker is recognized nationally and internationally for his work in public health and international childhood disability research. He was trained in Paediatrics and Public Health Medicine at the Children's Hospital at Westmead and National Centre for Immunisation Research and Surveillance (NCIRS). His current position is Director of Public Health and Director of Medical Research for the Central Queensland Hospital and Health Service. He established a population-based register for children with cerebral palsy (CP) in Bangladesh and is now leading an international multi-centre register of children with CP in low and middle-income countries (Global LMIC CP Register: GLM-CPR) in collaboration with over 30 organizations from 10 in low and middle-income countries in Asia, Africa and South America. Prof Khandaker has research collaborations in Australia, Bangladesh, Indonesia, Nepal, Sri Lanka, Vietnam, Zimbabwe, Ghana, Suriname and Saudi Arabia.
Co-Director of The Molly Wardaguga Research Centre, Professor Sue Kildea is internationally recognised as a midwifery leader at the cutting edge of Indigenous maternal and infant health and Birthing on Country Service design. She has strong links with Indigenous researchers and Aboriginal and Torres Strait Islander Community Controlled Health Organisations across the country, built across a 35-year career in clinical, research, education and policy. Since her PhD in 2005, she has maintained a 0.2-0.6FTE clinical load and has had a steep upwards research trajectory, ranked 13th most active researcher worldwide (2012- 17) in Maternity and Midwifery. She has supervised 20 HDR students and currently mentors 8 Early Career Researchers. She is a Chief Investigator on 5 NHMRC Grants (3 as CIA), 1 CIHR grant ($1.8M) and a NIH grant ($2M). Received 54 grants with direct responsibility for $9.1M of the $23.2M awarded, plus $6M for service delivery. Authored 178 publications and 46 keynote addresses. She won Research Australia’s Health services Research Award in 2018. Sue is passionate about the year before and after birth and see these as the best times to positively impact Mums, bubs and families for the best start in life. She uses research for social change and leads multi-site projects across Australia.
Gillian King is a Distinguished Senior Scientist (Bloorview Research Institute), Professor in the Department of Occupational Science and Occupational Therapy (University of Toronto), and Canada Research Chair in Optimal Care for Children with Disabilities (Tier 1). She has held over 100 peer-reviewed grants, authored over 200 peer-reviewed articles, and has developed and published over 20 measures for use in pediatric rehabilitation. Her work focuses on psychosocial aspects of care, including the delivery of health services, client engagement, family-centred care, client and family resiliency, and transition programming. Her current research focuses on measures of client, parent, and therapist engagement in service delivery, the key elements and processes underlying the effectiveness of youth transition programs, mental health and the participation of children and youth with disabilities, solution-focused coaching, and the role of resiliency in rehabilitation service delivery.
Rick Lieber is a physiologist who earned his Ph.D. in Biophysics from U.C. Davis developing a theory of light diffraction that was applied to mechanical studies of single muscle cells. He joined the faculty at the University of California, San Diego in 1985 where he spent the first 30+ years of his academic career, achieving the rank of Professor and Vice-Chair of the Department of Orthopaedic Surgery. He received his M.B.A. in 2013 and is currently Chief Scientific Officer and Senior Vice President at the Shirley Ryan AbilityLab and Professor of Physical Medicine & Rehabilitation and Biomedical Engineering at Northwestern University in Chicago, IL.
Dr. Lieber’s work in intentionally translational, applying basic scientific principles to help patients who have experienced spinal cord injury, stroke, musculoskeletal trauma or cerebral palsy. He has published almost 300 articles in journals ranging from the very basic such as The Biophysical Journal and The Journal of Cell Biology to clinical journals such as The Journal of Hand Surgery and Clinical Orthopaedics and Related Research. Dr. Lieber’s research focuses on design and plasticity of skeletal muscle. Currently, he is developing state-of-the-art biological and biophysical approaches to understanding muscle contractures that result from cerebral palsy, stroke and spinal cord injury.
Susan Michie, FMedSci, FAcSS is Professor of Health Psychology and Director of the Centre for Behaviour Change at University College London. She is co-Director of NIHR’s Behavioural Science Policy Research Unit, leads UCL’s membership of NIHR’s School of Public Health Research and is an NIHR Senior Investigator.
Professor Michie’s research focuses on behaviour change in relation to health and the environment: how to understand it theoretically and apply theory to intervention development, evaluation and implementation. Her research, collaborating with disciplines such as information science, environmental science, computer science and medicine, covers population, organisational and individual level interventions. Examples include the Human Behaviour-Change Project and Complex Systems for Sustainability and Health. She is an investigator on three Covid-19 research projects.
She serves as an expert advisor on the UK’s Scientific Pandemic Influenza Group on Behavioural Science (Covid-19) and is a member of WHO’s Behavioural Insights Technical Advisory Group. She is also expert advisor to Public Health England and the UK Department of Health and Social Care, is Chair of the UK Food Standard Agency’s Social Sciences Advisory Committee and chaired the Academy of Social Science’s ‘Health of People’ project.
Professor Suzie Miller’s training and expertise is in neurodevelopmental physiology. Suzie is an NHMRC Senior Research Fellow (Level B), Deputy Director of The Ritchie Centre at Monash University and the Hudson Institute of Medical Research, and she leads the Neurodevelopment Theme at the Centre. Her research group predominately uses experimental animal models of the primary causes of neonatal brain injury – including intrauterine infection, preterm birth, fetal growth restriction, and perinatal asphyxia - to better understand the progression of neuropathology under compromised conditions, so that targeted interventions can be implemented. Suzie and her clinical and research colleagues are working towards the translation of neuroprotective therapies before or after birth, so that neonatal brain injury can be reduced, and cerebral palsy might be prevented. An example of the translation of positive preclinical results through to clinical trial is evident in the current PROTECT-ME trial of antenatal melatonin for pregnancies complicated by fetal growth restriction; Suzie led the preclinical work to show that melatonin acts as a strong neuroprotective agent for the developing fetal brain, predominantly via melatonin’s anti-oxidant and anti-inflammatory effects. This international trial is currently recruiting and we keenly await results.
Dr Steve O’Flaherty is a Rehabilitation Paediatrician who has worked with children for over 50 years. Originally from New Zealand he completed consultant training at Sydney Children’s Hospital and then worked as the community Paediatrician for western Sydney. From the late 1980s he was head of the Paediatric Rehabilitation department at Westmead Hospital until 1995 when all Paediatric services moved to the Children’s Hospital at Westmead where he was the inaugural head of Paediatric Rehabilitation (Kids Rehab) for 17 years. He oversaw the introduction in Australia of training of Paediatric advanced trainees in Paediatric Rehabilitation. This avoided the previous need to travel overseas for training. Such training is now offered in all Paediatric Rehab services around Australia. From this a cohort of trained consultants has developed and has facilitated the staffing of units in Australia and NZ. Amongst other things and with his colleagues he oversaw the introduction at Kids Rehab of Botulinum Toxin, Intrathecal Baclofen, Selective Dorsal Rhisotomy and Deep Brain Stimulation treatment options for managing movement disability especially in children with CP and he was part of the team that facilitated relocation of the Paediatric Gait Lab to CHW. He continues clinical work with children with CP as a senior Staff Specialist in Paediatric Rehabilitation at Sydney Children’s Hospital.
Rupal is the Founder and CEO of VocaliD, a voice technology company that provides AI-generated voices with personality. VocaliD’s award-winning technology leverages the latest advances in machine learning, signal processing and voice analytics along with the company’s crowdsourced Voicebank to create inclusive, diverse and brand aligned voices for organizations and individuals with special needs. Rupal began her career as a speech clinician where she became fascinated with the potential of using speech technologies for assistive communication which then led to a doctorate in speech science. Her interdisciplinary research applies empirical evidence about speech motor control to develop novel communication technologies. She is currently on leave from Northeastern University where she is a tenured professor in Bouve College of Health Sciences and The Khoury College of Computer Sciences. A Health Innovation Fellow of the Aspen Institute, Rupal was named one of The Top 11 Visionaries in Voice 2019 by Voicebot.ai and Fast Company’s 100 Most Creative People in Business. Rupal has also been featured on TED, NPR, and in major international news and technology publications around the world.
Mark D. Peterson is the Charles E. Lytle, Jr. Research Professor at the University of Michigan-Medicine (Ann Arbor, Michigan, U.S.), Department of Physical Medicine and Rehabilitation, a Fulbright Scholar, and an active member in the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM), the International Society of Physical and Rehabilitation Medicine (ISPRM), and the American College of Sports Medicine (ACSM). Dr. Peterson’s work focuses on understanding factors that influence health and life expectancy among individuals aging with disabilities across the lifespan. This includes efforts directed at identifying precision strategies to prevent cardiometabolic dysregulation and secondary physical and psychological morbidity among children and adults with cerebral palsy, as well as a variety of frailty syndromes, and to better understand health disparities among individuals with disabilities from the context of access to preventive care and community wellness. Dr. Peterson has published more than 150 peer reviewed scientific articles in the fields of exercise physiology, rehabilitation research, physical activity epidemiology, healthcare disparities, and preventive medicine.
Co-Director of The Molly Wardaguga Research Centre, Professor Yvette Roe is a proud Njikena Jawuru woman from the West Kimberley region, Western Australia. Yvette grew up in Darwin where she has strong family and friend connections. Yvette has more than 25 years’ experience working in the Indigenous health. She was awarded her PhD, in 2015. As an Aboriginal scholar, Yvette’s research and priority has been to identify opportunities to improve health outcomes for First Nations peoples by delivering and evaluating services that are client, family and community focused. Yvette has diverse interests across a number of disciplines such as public health, sociology, and realist evaluation. She is a CI/AI on 5 NHMRC and Lowitja Institute grants and leading research across multiple sites in Australia to build First Nations people research capacity. She is a member of the NHMRC Research Committee (2018-2021) and Principal Committee Indigenous Caucus (2016- 21) an advisory body for the NHMRC Council and CEO on First Nation health research and implementation of NHMRC Roadmap II. She provides Indigenous leadership across all of the studies in the Molly Wardaguga Research Centre.
Tom Shakespeare trained at Cambridge University, and has worked at Sunderland, Leeds, Newcastle, University of East Anglia and London School of Hygiene and Tropical Medicine, where he is professor of disability research. He has conducted research on disability and sexuality, with disabled children, on bioethics, on restricted growth, on independent living, on rehabilitation, on inclusive education and on employment of disabled people. He also spent five years in the WHO Disability and rehabilitation team. His books include Disability Rights and Wrongs and Disability – the Basics. He broadcasts regularly on BBC Radio.
I will present data on how neuroimaging can help assess the developing brain, how brain structure and function matures and the effect of sensorial activity on brain maturation from the newborn to adolescence.
Highlight the international relevance of your work for delegates?
Prematurity is a worldwide problem and findings ways to reduce the burden of neurodevelopmental consequences is of international relevance. We developed ways of using easy to use developmental care interventions (music, mindfulness) to improve neurodevelopmental outcome
What key messages will you have for community members and people with lived experience of child-onset disability?
Understanding the structural and functional basis of child-onset disability provides means to develop brain based developmental care interventions .
What makes conferences such as this important?
Meetings that bring together patients, parents, professionals and scientists will help advance medicine and care for us all. .
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Listen-reflect-challenge views and have a great time socializing.
What are you most looking forward to at the Better Together 2022 Conference?
Interacting with patients parents professionals and scientists and learn more about what is important in child onset disability.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
Roger Federer loves Melbourne so where else could it be.
Do you have any hobbies outside of your work?
My work is my hobby and if I really need a break you will find me on the golf course
What was your guilty COVID isolation pleasure?
MMh… never was really isolated went to work every day-but maybe eating one to many chocolates (very efficient antidepressant).
Get to know Gulam
What can delegates expect to hear from you?
Epidemiology (determinants and distribution) of CP in low resource settings, practical experience of setting up surveillance mechanisms (e.g. CP registers) in low resource settings, research needs and opportunities for collaboration.
Highlight the international relevance of your work for delegates?
My work involves the majority world population (i.e. the low- and middle-income countries). It is estimated that there are 50 million people with CP globally of which 80% lives in LMICs.
What key messages will you have for community members and people with lived experience of child-onset disability?
I will share the voice of those living in extremely difficult conditions, marginalised and barely have access to any form of early intervention, rehabilitation.
What makes conferences such as this important?
This is one of the biggest gathering of clinicians, researchers, academics working on cerebral palsy and other disabilities.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Meet with people, say hello, introduce yourself, attend all the social (and scientific) events, and take these opportunities to collaborate.
What are you most looking forward to at the Better Together 2022 Conference?
I am hopeful that by Mar 2022, life would return to some degree of normality, and this conference would give us the opportunity to come together as a group, collaboratively and effectively to share our ideas and work on CP and developmental medicine.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
I am Queenslander, so, I rather not comment on this 😊 Melbourne is a great city, looking forward to enjoying the food and vibe of Melbourne.
Do you have any hobbies outside of your work?
Cooking and gardening (host and chef at philosopher’s kitchen (a boutique restaurant), where attendance is only by invitation for those with an open mind and taste for imagination)
What was your guilty COVID isolation pleasure?
As a frontline HCW I was working throughout the pandemic and did not really need to isolate.
Get to know Steve
What can delegates expect to hear from you?
I intend to cover some historical aspects of development of Paediatric Rehabilitation services in Australasia, the importance of teams working together and present some thoughts about future development.
Highlight the international relevance of your work for delegates?
It is hoped that the experiences in the development of Paediatric services in Australasia will be of some use to other areas of the world where these services are yet to be in place.
What key messages will you have for community members and people with lived experience of child-onset disability?
The message is that there is a group of well-trained trained professionals; therapists, nurses and doctors who are dedicated to sharing their knowledge in assisting you in the care for your child. You are not alone.
What makes conferences such as this important?
One of the ‘lessons” from the restrictions that Covid has taught is the importance of the collegiate experience of meeting with colleagues, sharing viewpoints and mixing socially. It is to be hoped that our meeting in 2022 will allow this to be re-introduced so we can all benefit from the interchange of information from the widespread group of attendees that the combined meeting will bring together.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
The clearest thing I remember from attending my first American Academy of CP meeting was not the information learned. It was unquestionably the people I met and with whom I have caught up with many times at subsequent meetings and in several cases have visited them and vice versa. Make yourself known. We’re a friendly lot.
What are you most looking forward to at the Better Together 2022 Conference?
The same as the above answer.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
For the “second best” city in Australia it is still a wonderful place to visit! The food scene is fantastic – maybe even better than my home city of Sydney - and transport access is excellent with March being a great time to visit and enjoy the local hospitality.
Do you have any hobbies outside of your work?
I play golf – a lot; travel – a lot when Covid allows; socialise with friends and enjoy dining out and good wine.
What was your guilty COVID isolation pleasure?
Undisturbed reading – I did not feel too guilty though.
Get to know Gillian
What can delegates expect to hear from you?
A presentation that is grounded in the literature and highlights the importance of developing new ideas, the tools needed to explore these, and working with clinicians and knowledge translation specialists to move ideas into practice.
Highlight the international relevance of your work for delegates?
My work involves international collaborations with researchers in Canada, Australia, Sweden, and the United States.
What key messages will you have for community members and people with lived experience of child-onset disability?
A key message in most of my work is the importance of people’s beliefs about themselves, their relationships with others, and the things that give them a sense of energy and value in the world. We should not ignore the importance of expectations, assumptions, and values.
What makes conferences such as this important?
The key value to me is the coming together of like-minded people with similar interests. Conferences such as this serve to develop a ‘community of practice’ that embraces researchers, people with lived experience, clinicians, students, and educators.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Try to meet as many people as possible, you never know what connections you may find in terms of shared interests.
What are you most looking forward to at the Better Together 2022 Conference?
Hopefully the COVID situation will have eased by March 2022. I am most looking forward to hearing new ideas and connecting with new people.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
Yes! Melbourne is a lovely city filled with lots to do. I’ve been there before and would love to return. Check out the singing bridge! https://www.youtube.com/watch?v=R4D_2ri_UEs. The Melbourne Convention and Exhibition Centre is a state-of-the-art venue.
Do you have any hobbies outside of your work?
My hobbies include running, yoga, resistance training, and walking (keeping fit in general). I also love gardening and am an avid reader of mystery and science fiction books.
What was your guilty COVID isolation pleasure?
That would be potato chips or any salty, crunchy snack, they were my pre-COVID pleasure too!
Get to know Rick
What can delegates expect to hear from you?
A bit of review about “what we know” about muscle in cerebral palsy but also current and future opportunities for discovery and treatment in children with cerebral palsy.
Highlight the international relevance of your work for delegates?
I believe that our work is relevant to the world in that we are one of the few laboratories in the world working on actual skeletal muscle from children with cerebral palsy rather than working on animal models. The work is slower, because it requires human subjects research, but we believe that it is extremely relevant and offers the promise for development of future therapeutics.
What key messages will you have for community members and people with lived experience of child-onset disability?
There is great hope for the future to help kids with cerebral palsy. We have new sets of powerful tools, are more closely aligned in purpose, and have better communication than ever. We are here to help!
What makes conferences such as this important?
It is rare for investigators with such diverse backgrounds to gather around a single purpose—helping our patients with cerebral palsy and working toward their improved lives. Typically, we gather with folks of the same discipline, not those trying to solve the same problem!
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Follow your passion and intentionally link your cart to great mentors.
What are you most looking forward to at the Better Together 2022 Conference?
I love spending time with my international colleagues and to vibrant and open discussions related to important topics in cerebral palsy patients.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
We have to intentionally get away since it’ such a long trip for everyone. As a result we probably will not have folks coming in just for a day. Thus, we can have long and sustained interactions that should lead to new collaborations and experiments.
Do you have any hobbies outside of your work?
I am an avid runner and love playing guitar alone or with friends. I am also an avid sports fan!
What was your guilty COVID isolation pleasure?
I am boring. I read some great books!
Get to know Susan
What can delegates expect to hear from you?
A new way of thinking about behaviour and how to change it, both in relation to professionals and in relation to those they are providing a service to. Relevant resources are on the Centre for Behaviour Change website.
Highlight the international relevance of your work for delegates?
The Behaviour Change Wheel guide to developing interventions is my most widely read book. A user-friendly version is available free.
What key messages will you have for community members and people with lived experience of child-onset disability?
Understanding behaviour and how to change it is of potential use for everyone – in relation to enabling others and thinking about one’s own situation.
What makes conferences such as this important?
After the global pandemic, conferences where people can be together in person, sharing the same experiences, networking over drinks and meals and discussing issues in the same room will be a great treat.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Don’t be afraid to go up to speakers or anyone else and talk to them – conferences are about networking and my favourite conferences are those where first year students and Professors talk (and even dance) with each other.
What are you most looking forward to at the Better Together 2022 Conference?
Getting to know something of a scientific and professional organisation that is new to me and meeting new people doing important work.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
I have been to many cities in Australia and Melbourne remains my favourite – coming from London, diversity and celebrating diversity in all forms including culturally, are important.
Do you have any hobbies outside of your work?
Tennis, yoga, walking, cryptic crosswords, playing with my grandchildren
What was your guilty COVID isolation pleasure?
I don’t do guilt, such an unhelpful emotion! Putting my camera off and do what I want to do during boring meetings was fun.
Get to know Suzanne
What can delegates expect to hear from you?
My talk will present our most recent preclinical data to show the correlation between the progression of neuropathology that occurs with fetal growth restriction (FGR) and functional deficits in the neonatal period, with a particular emphasis on compromised brain connectivity in infants born with fetal growth restriction.
Highlight the international relevance of your work for delegates?
My group have been characterising neuropathology associated with fetal growth restriction for over a decade, and the work I will present at the meeting complements the work of international groups such as that of Professor Petra Huppi (who is also presenting at the meeting) who have shown deficits in brain connectivity using brain imaging. Our work has examined the progression of neuropathology at the individual cellular level, which likely underlies poor brain connectivity.
What key messages will you have for community members and people with lived experience of child-onset disability?
I am really keen to let community members know that my team, and many scientific research teams around the world, are working extremely hard to better understand the mechanisms that cause perinatal brain injury so that interventions and therapies can be in implemented to reduce the progression of brain injury, with the end-goal of preventing disability.
What makes conferences such as this important?
The AusCPDM/ IAACD meeting is a fabulous opportunity to bring together varied expertise, experience and up-to-date results to improve outcomes for individuals with cerebral palsy and childhood disabilities. There is no other conference like it where we can hear from such a large number of speakers all working towards this common goal of improved outcomes.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
I would really encourage students and ECRs to engage and speak with presenters and other meeting attendees. Large meetings can feel a bit intimidating, but it is such a great opportunity to talk to others, make new friends, ask questions and tell others about your own work.
What are you most looking forward to at the Better Together 2022 Conference?
I’m looking forward to carefully highlighting and mapping my timetable so I can get to hear all the sessions and speakers of interest to me! I love that I can go from an in-depth scientific talk on mechanisms that mediate neuropathology, to talks on state-of-the-art brain imaging, through to talks on lived-experiences. It keeps me engaged and I come away having learnt so much.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
This is a great way to showcase Melbourne and the excellent research that is coming out of Victoria and Australia. I really hope that the majority of international speakers and meeting attendees can come in person, because catching-up in person after a day’s talks is a wonderful opportunity to engage with established and new research friends.
Do you have any hobbies outside of your work?
Work takes up a lot of my time, but outside of work I like to relax with my husband and children, not look at emails and take our dog for a run.
What was your guilty COVID isolation pleasure?
Too much chocolate for sure…. And therefore needing to spend a lot more time running!
Get to know Rupal
What can delegates expect to hear from you?
I will be sharing insights from our work on personalized speech synthesis and implications for communication participation. I’ll also share early findings from related work in the area of social identity.
Highlight the international relevance of your work for delegates?
Over the past 6 years, we have recruited voice contributors from 120 countries. I’d like to discuss how crowdsourcing can be utilized to a greater extent to advance research and clinical practice.
What key messages will you have for community members and people with lived experience of child-onset disability?
The medical model of Speech and Language Pathology tends to focus on loss of function in comparison to typically development. I believe that child-onset disability alters almost every aspect of development not just the core area of impairment. There are compensatory skills that are learned and difficult to neatly separate from the impairment. I think that we could better serve this population by studying and treating their residual abilities rather than focus on how those skills differ from typical development.
What makes conferences such as this important?
Conferences such as this bring together researchers, clinicians, advocates, those living with communication impairment and others from different perspectives which is key to gaining a more comprehensive understanding of complex issues. It’s also amazing how conversations in between talks or at the breaks can provide key insights and lead to friendships and collaborations that last a lifetime.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
When you make a list of the presentations you want to see, make at least 10% in areas that you think you are not really interested in. I think we tend to close off our interests too early. You’ll be surprised that you’ll actually learn more in those sessions than attending talks in areas you are already passionate about. I would also spend time in the exhibit hall and the poster sessions because you often learn more when you can actively participate in the learning. Last, if there are particular people you want to meet, try to set that up ahead of time.
What are you most looking forward to at the Better Together 2022 Conference?
I am looking forward to learning more about how researchers and clinicians are thinking of incorporating advances in technology into their research/clinical practice. What are their hopes, fear and opportunities.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
I haven’t been to Melbourne before but from what I understand, it’s a major city that is accessible and thus makes a perfect venue for this type of conference. The University and local hospitals will also help to attract a critical mass for the meeting.
Do you have any hobbies outside of your work?
I love almost any form of art – painting, drawing, sculpture, cooking. I enjoy making art and enjoying that created by others.
What was your guilty COVID isolation pleasure?
I never used to watch TV. We don’t even have cable. But now, I find myself binging on Netflix every once in a while to escape the boredom of everyday life. It’s usually a binge session every couple weeks.
Get to know Mark
What can delegates expect to hear from you?
I will be sharing my research from the United States, pertaining to health outcomes among adults with CP. I will specifically be discussing the state of the literature surrounding lifespan health and development for individuals living with CP, with specific attention given to the unique burden of preventable, noncommunicable diseases attributed to physical inactivity and aging in this population.
Highlight the international relevance of your work for delegates?
Although my work focuses on clinical and population-representative cohorts from the United States, our work is highly relevant to the growing adult CP population, globally. Improved clinical and public health infrastructure for screening, treating, and preventing chronic disease and mental health disorders is of international relevance.
What key messages will you have for community members and people with lived experience of child-onset disability?
Adults with CP and other childhood-onset disabilities consistently report feeling deserted by their health professionals when they are discharged from paediatric services, and struggle to access appropriate continuity of care when they begin experiencing declines in health and function as early as young adulthood. I will convey to community members and people with lived experience (or caregivers) to strongly advocate for themselves, and demand comprehensive preventive medicine screening
and/or referrals to specialists to identify risk for early-onset (and preventable) metabolic, cardiovascular, musculoskeletal diseases, as well as mental health disorders.
What makes conferences such as this important?
Conferences such as this are so valuable to me. I greatly appreciate the opportunity to learn from my long-time and new friends and colleagues, as well as network and brainstorm future collaborations, visit and experience different cultures, seek adventures, and explore new places.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Connect with other attendees and network as much as possible. Don’t be afraid to reach out to senior investigators… everyone is excited to help.
What are you most looking forward to at the Better Together 2022 Conference?
I am really looking forward to participating in the preconference workshop pertaining to Adults with CP. This will be the first time that so many experts will be able to share insights and international perspectives on this topic.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
Yes! I’ve never been to Melbourne, Australia! I cannot wait to explore and meet new people!
Do you have any hobbies outside of your work?
Yes! I enjoy my daily exercise routine, as well as regular outdoor recreation such as hiking, biking, running, and kayaking!
What was your guilty COVID isolation pleasure?
I look forward to my daily Amazon and/or Zappos deliveries.
Get to know Tom
What can delegates expect to hear from you?
I generally talk about how disabled people can feel good about themselves, and how health professionals can support them in that. I am sure I will get more specific as the date draws closer! We may be living in a very different world by then.
Highlight the international relevance of your work for delegates?
I have researched in Africa and Asia as well as in UK, so I am aware of the differences for low, middle and high income country settings. The need to change attitudes towards people with disabilities is common across the board.
What key messages will you have for community members and people with lived experience of child-onset disability?
Collaborating with good academics is worth doing. It will grow your skills and insights and confidence. Working with professionals is all about good partnerships.
What makes conferences such as this important?
Conferences are a great way of getting an overview of a field, of networking with your peers, and trying out your ideas.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Talk to strangers – networking is what it’s all about.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
It’s a lovely place, excellent food, and you might get to see some footy!
Do you have any hobbies outside of your work?
Art and culture, good food, and creative writing.
What was your guilty COVID isolation pleasure?
Cheese.
Get to know Sue
What can delegates expect to hear from you?
Passionate support for Birthing on Country
Highlight the international relevance of your work for delegates?
Birthing on Country is an international movement to return birthing services to Indigenous and other communities to improve outcomes for mothers and babies.
What key messages will you have for community members and people with lived experience of child-onset disability?
It’s important for health service researchers to hear your stories.
What makes conferences such as this important?
Networking with other researchers
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Be brave and go and introduce yourself to the speakers you loved the best.
What are you most looking forward to at the Better Together 2022 Conference?
Learning from others.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
Yes, it’s a great place to visit with fabulous art galleries, restaurants and parks.
Do you have any hobbies outside of your work?
Bushwalking.
What was your guilty COVID isolation pleasure?
Working from home.
Get to know Yvette
What can delegates expect to hear from you?
Cutting edge research design and outcomes that demonstrate and improve life expectancy of Aboriginal and Torres Strait Islander mothers and babies in the first 1000 days.
Highlight the international relevance of your work for delegates?
This is an international movement and First Nations people in colonised countries are leading the way in presenting solutions on how these health inequities can be addressed.
What key messages will you have for community members and people with lived experience of child-onset disability?
Importance of privileged Aboriginal and Torres Strait Islander knowledge in developing solutions.
What makes conferences such as this important?
It is critical for opportunities to share and improve ATSI morality in the first 100 days.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Be passionate about what you do. Research is about transformation.
What are you most looking forward to at the Better Together 2022 Conference?
Opportunity to network with likeminded people and share our findings.
Do you see any particular benefits of having the conference in Melbourne/ Australia?
Yes, it is a very dynamic town with lots of interest and a great gathering spot.
Do you have any hobbies outside of your work?
Hiking, trail running, AFL, reading.
What was your guilty COVID isolation pleasure?
Planning hiking trips for when COVID was over.
Get to know Hans
What can delegates expect to hear from you?
I will give a global perspective on childhood disability and the rational for building a global network of professionals working with children and youth with developmental disabilities; particularly including colleagues in low and middle income countries. I will describe the founding of the International Alliance of Academies of Childhood Disability (IAACD) 2014 and its growth and development until the Melbourne conference 2022. At the end I will highlight future challenges.
Highlight the international relevance of your work for delegates?
The mission of IAACD is to improve the health and well-being of children and youth with developmental disabilities around the globe by enhancing local multidisciplinary professional capacity and expertise. IAACD promotes evidence-based teaching and training of multidisciplinary professionals, implements best clinical practice change, supports collaborative scientific and needs-driven research, and fosters collaboration of all involved in the care of children and youth with disabilities including parents, caretakers, communities and professionals.
What key messages will you have for community members and people with lived experience of child-onset disability?
Children with disabilities and their families are often neglected and face discrimination and exclusion from health care and education services. Driven by global goals most LMICs have focused on reducing childhood mortality, leaving disability low in their priorities. In order to change global priorities, and influence governments to provide evidence based services for children and youth with developmental disabilities, people with lived experience, parents, and community members are encouraged to collaborate with IAACD on both international and local levels.
What makes conferences such as this important?
The Triennial conferences are the premier events of the IAACD and a prestigious opportunity for the hosting Academy to hold a large international conference of high scientific standard, which provides an international forum for knowledge transfer in the field of childhood disability. The conference will present knowledge of new research results and methods; knowledge of evidence based clinical practice; education, training and career development (in particular for younger and from both low and high resource settings); promote connection among members leading to the development of international collaboration and networks; reinforce the link between the users and health professionals at a local, regional and international level.
What is the best piece of advice you could give a student or early career researcher who is attending their first big conference?
Make friends. Involve yourself in international networks of interest for your research. Search for and make contact with researchers of scientific articles you have found particularly interesting and useful for your research. Prepare intelligent questions to ask.
What are you most looking forward to at the Better Together 2022 Conference?
The 3rd International Conference in Melbourne will mark a milestone in the development of the IAACD. There will be a transition into the constitutional organization, a transfer of power to an elected Executive Committee and the first face to face meeting of the Governing Council (and I will exit my 8 year-leadership of IAACD).
Do you see any particular benefits of having the conference in Melbourne/ Australia?
The Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) is one of the three Founding Academies and has been instrumental in the development of IAACD. The academy and its members have contributed significantly to international research in childhood disability and expanding our knowledge in this area. Therefore, I am glad that the AusACPDM is hosting the third international conference in Melbourne and I am sure it will become a great success.
