Speakers

A/Professor Jasneek Chawla is a Paediatric Respiratory and Sleep Medicine Specialist at Queensland Children’s Hospital, Brisbane and leads the Kids Sleep Research Group at the Child Health Research Centre, University of Queensland. Her research interests include sleep in children with complex disability and the development of novel measurement tools for paediatric sleep medicine. A/Prof Chawla holds a Children’s Hospital Foundation, Early Career Fellowship and is leading a multi-centre MRFF funded study focused on improving the diagnosis and management of sleep disorders in children with neurodisability. Her PhD work focused on sleep problems in children with Down syndrome and provided the foundations for her ongoing research and forged a strong connection with Down syndrome Queensland and Down syndrome Australia. A/Prof Chawla is a board director for the Australian Sleep Association and is chair of the Education Committee and deputy chair of the conference committee. She is a strong advocate for children with disability and chronic illness and collaborates widely with many consumer representative organisations and individuals with lived experience through her research.

I love Rugby League and most other sports. I love to dance. I love my family and friends. In the NRL I support the Canberra Raiders and I’m a very passionate supporter of theirs. I’ve attended many of their games and had photographs taken with them.

I work for a company called EML, as an office assistant. I catch the bus to and from work, and often like to call in at the shops on the way home. In addition to working, I have also been involved in doing research with my sister, Kathy Cologon. I’m passionate about inclusion, too.

I live with my parents and one of my brothers in Canberra. I also own apartment, which I rent out to a tenant. That is an investment for my future. Before joining EML, I used to work in real estate.

I’m a member of a dance group called The Dream Team. We have classes each week at LEGS Dance Studio. I really enjoy the dancing.

Also, I have Down Syndrome.

Dr Kathy Cologon (she/her) lives and works on Darkinjung Country. Kathy is Principal Consultant at Toward Equity, Diversity, and Inclusion and Honorary Senior Lecturer in Inclusive Education at Macquarie University. Kathy is privileged to work with many children, families, teachers, educators, allied professionals, services, and a wide range of organisations. The crux of what drives Kathy's work is a belief in the value of human beings in all our wonderful diversities and recognition that this has important implications for the role of education and accessibility in our communities. Through her work, Kathy seeks to contribute to increased knowledge and understanding regarding how to provide effective opportunities to enable all people to flourish as valued community members. This requires challenging normative and deficit assumptions and engaging with practical issues relating to children's rights and inclusion. With extensive experience in the field prior to commencing her work in academia, followed by 15 years of educating teachers, Kathy has a depth and breadth of understanding of the many facets of inclusive education. This continues to develop through her ongoing research and engagement with children, families, teachers and allied professionals. Kathy is nationally and internationally renowned for her work in Inclusive Education, including literacy learning, and Disability Studies. Kathy has published more than 50 papers, book chapters, and books.

Rosalind Firenze is the scientific program director, serving the Alana Down Syndrome Center (ADSC) and Aging Brain Initiative at MIT, of the Picower Institute for Learning and Memory. ADSC was established in 2019 at MIT to deepen knowledge about Down syndrome and to improve health, autonomy and inclusion of people with Down syndrome. ADSC research is multi-disciplinary, engaging the expertise of scientists, clinicians and engineers to increase understanding of the biology and neuroscience of Down syndrome. With a background in scientific research and communication, Rosalind oversees and supports the scientific vision of collaborative research efforts for ADSC across MIT and beyond. Firenze, a biomedical engineer and neuroscientist by training, began her scientific career at the University of Virginia, where she received her Ph.D. studying mechanobiology and cardiovascular disease. Her post-doctoral work at the University of Pennsylvania encompassed efforts to understand the impact of traumatic brain injury on neural function and to develop potential therapies for traumatic brain injury. Before joining MIT and ADSC, she served as a senior scientific editor at Cell Press to advance scientific communication across disciplines.

Cindy Johns lives in New Plymouth, New Zealand and is the parent of five adults, one of whom has Down Syndrome. She is the National Manager of People First New Zealand, a disabled persons organisation run by and for people with learning disabilty.

Cindy has worked, voluntarily and professionally, alongside people with a learning/ intellectual disability and their families for over 35 years.

Cindy is the Chair of Family Networks NZ, a family-led non-profit agency whose work is focused on supporting those family members with learning disability to lead self-directed lives.

In 2014, she began working alongside Sir Robert Martin while he was campaigning for and then took on his role as an Independent Expert for the United Nations Committee on the Rights of Persons with Disabilities.

Roy McConkey is Emeritus Professor of Developmental Disabilities at Ulster University, Northern Ireland. A psychologist by training and a native of Belfast, he has previously held posts in England, Scotland and the Republic of Ireland. He has been visiting Professor at the University of Cape Town, South Africa, University of Sydney, Australia and at Trinity College, Dublin.

He has worked in the field of intellectual and developmental disabilities for over 50 years and has authored, co-authored and edited over 15 books, and published around 200 book chapters and research papers in learned journals.

He has acted as a consultant to various United Nations agencies and International NGOs, and spoken at many international conferences. This work has taken him to some 25 countries in Eastern Europe, Africa, Asia, and South America. Currently he is a consultant to Special Olympics International on health and social inclusion projects.

In 2015 he was awarded an OBE by Queen Elizabeth for services to intellectual and developmental disabilities. He was also the recipient of the International Award from the American Association for Intellectual and Developmental Disabilities.

Alastair McEwin AM is a strategic and solutions-focused leader, with extensive experience in disability and human rights, and a strong record of service to Australia through senior executive and Commonwealth statutory office holder roles. Profoundly deaf, Alastair has held numerous management and governance roles in the private, government and non government sectors. He has served as Australia's Disability Discrimination Commissioner at the Australian Human Rights Commission, and as a Royal Commissioner with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Alastair is currently working as a consultant in disability and human rights, including as a Senior Fellow with the Grattan Institute. He is an Adjunct Professor with the Australian Graduate School of Management (AGSM), UNSW Business School at the University of New South Wales (UNSW).

Katie Novak, Ed.D., is an internationally renowned education consultant, author, graduate instructor at the University of Pennsylvania, and a former Assistant Superintendent of Schools in Massachusetts. With 20 years of experience in teaching and administration, an earned doctorate in curriculum and teaching, and fourteen published books, Katie designs and presents workshops both nationally and internationally focusing on the implementation of inclusive practices, Universal Design for Learning (UDL), multi-tiered systems of support (MTSS), and universally designed leadership. Novak’s work has impacted educators worldwide as her contributions and collaborations have built upon the foundation for an educational framework that is critical for student success.

Dr. Novak is the author of the best-selling books, UDL Now! A Teacher’s Guide to Applying Universal Design for Learning in Today’s Classrooms, Innovate Inside the Box, with George Couros, Equity by Design, with Mirko Chardin, and The Shift to Student-Led with Catlin Tucker.

ARC Industry Fellow

ARC Centre of Excellence for Children and Families over the Life Course
School of Social Science
The University of Queensland

Cameron is a Professor of Social Science and an Australian Research Council Industry Fellow at The University of Queensland. Cameron’s research partners with not-for-profit human service providers and the people using their service. He aims to co-develop new knowledge to understand how not for profit organisations and government social policy can be responsive to and informed by people reliant on services. Cameron’s program of research contributes to highlighting the perspectives, excellence, and knowledge of people excluded from mainstream systems, including people with disabilities.

Nora Shields is Professor and Senior Research Director at the Olga Tennison Autism Research Centre in Melbourne. A physiotherapist by background, Nora aims to improve the health and wellbeing of people with Down syndrome and other disabilities, by increasing their participation in physical activity. Her community exercise research has produced an evidence base where there previously was none. Nora developed a new exercise model called FitSkills, successfully testing it in a series of clinical trials which showed adolescents and young adults with Down syndrome can exercise effectively in community gyms with social support provided by peer mentors. FitSkills was the winner of the 2021 VicHealth Leading Health Promotion Research Award and the 2020 Victorian Sports Awards, Active Recreation Initiative of the Year. During 2023, Nora collaborated with Down Syndrome Victoria who now offer FitSkills as part of its member services.

A Board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital’s Down Syndrome Program, he has dedicated his professional energies toward children with cognitive and development disabilities. He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently an Associate Professor at Harvard Medical School. Dr. Skotko is a leader on clinical and translational research about Down syndrome. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.

Iva Strnadová is a Professor in Special Education and Disability Studies at the University of New South Wales Sydney (UNSW), Australia. She also leads the research agenda of the Disability Innovation Institute (DIIU) at the UNSW Sydney. Her research aims to contribute to better understanding and the improvement of the life experiences of people with disabilities, especially people with intellectual disabilities. Combining research with advocacy is essential in her research program, which builds on supporting the self-determination (including self-advocacy) of people with intellectual disabilities, and is grounded in an innovative inclusive research approach, in which people with intellectual disabilities are included in the role of researcher.

Professor Iva Strnadová has a particular research interest in the well-being of people with developmental disabilities (intellectual disabilities and autism) and their families over the life span, diverse transitions in the lives of people with disabilities (particularly intellectual disabilities and autism); girls and women with intellectual disabilities; parents with intellectual disabilities; people with profound intellectual and multiple disabilities, and inclusive research. She is a world-recognised leader in and a passionate advocate for co-production in matters relevant to people with intellectual disabilities and on the autism spectrum.

Prof Wolvetang is a senior group leader at the Australian Institute for Bioengineering and Nanotechnology at the University of Queensland (Australia) where he leads a research team that employs human induced pluripotent stem cell derived brain organoids as in vitro disease models for monogenic, complex (such as Down syndrome) and environmentally induced neurological diseases. Leveraging these “human brain in a dish” models he aims to understand how genetic defects cause diseases that affect the brain during development and later in life, and to identify and test therapeutic approaches that can improve patient health outcomes.

Charlotte Woodward is a young woman with Down syndrome who has had four open-heart surgeries and a lifesaving heart transplant. She works at the National Down Syndrome Society as the Education Program Associate. As the third registered lobbyist with Down syndrome, she promotes the passage of important state and federal legislation that impacts the disability community. There is currently legislation before both the House and the Senate of the U.S. Congress that bears her name: the Charlotte Woodward Organ Transplant Discrimination Prevention Act. Charlotte is a recent graduate of George Mason University from which she received a Bachelor of Arts degree in Sociology with a concentration in Inequality and Social Change. Charlotte’s studies and her work perfectly complement each other - as a sociologist, she examines the structural and systemic inequalities in society that affect the lives of people with disabilities, and as an advocate, she uses this knowledge to raise awareness and to affect positive change. She is a passionate advocate for the human and civil rights of all people with Down syndrome and frequently writes and speaks on issues important to the disability community.