#LA2024 Conference call for abstracts

Join us for the Luminesce Alliance 2024 Conference – Paediatric Precision Medicine: Advancing Research and Patient Care at the UNSW Sydney, Australia from 7–8 November 2024.

The aim of the conference is to showcase innovation, collaboration, and excellence in precision medicine research. Together we will explore the latest developments in basic, translational, and clinical research concerning children and families grappling with rare genetic diseases and cancers.

The conference brings together a distinguished cohort of keynote speakers and a wide range of researchers and clinicians including, post-graduate students, early career Fellows, nurses, allied healthcare workers, as well as government and the MedTech and Pharma industries.

Call for abstracts

View the call for abstracts including key dates, guidelines, FAQs and submission portal. View call for abstracts

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Become a sponsor and partner with us to engage our highly collaborative, multidisciplinary research community in a meaningful and enjoyable way. Multiple sponsorship opportunities tailored for organisations of all sizes are available. Download the sponsorship prospectus

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Luminesce Alliance and Child UnLimited form partnership

Luminesce Alliance and Child UnLimited are delighted to form a collaborative partnership to strengthen the consumer engagement initiatives included in Luminesce Alliance’s Psychosocial Enabling Platform.

The partnership builds on Child UnLimited’s expertise and networks to ensure that consumers are guiding the research supported by the platform.

Luminesce Alliance is one of the first organisations in the world to examine the psychosocial impacts of precision medicine on children and their families.

Precision medicine, also known as personalised medicine, offers precise assessment, diagnosis and treatment based on analysis of complex biological systems, such as through genetic or molecular profiling. It is especially important for children, as admissions to tertiary paediatric hospitals in NSW are dominated by genetic conditions (about 40-50% are estimated to have a major genetic contributory factor) and around 15-20% of childhood cancers appear to be associated with an underlying genetic predisposition.

Anastasia Ioannou, Executive Director, says “Our research insights contribute to world leading collaborative psychosocial research in childhood genetics. We aim to improve the understanding of how patients, carers and health professionals deal with the challenges of the introduction of precision medicine, such as the risk of unrealistic expectations and understanding the implications of genetic screening for the extended family.”

“Psychosocial approaches to medicine look at patients’ and families’ experiences, understanding and communication around treatment, the surrounding social environment, and how these combine to impact the physical and psychological wellbeing of individuals.”

Kris Pierce Director, Child UnLimited – Consumer Engagement, says “Our combined efforts will prioritise the psychological, social, and educational wellbeing of patients and their families. The programs emphasise support for priority populations to ensure equitable access and to inform the development of resources to benefit all families and health professionals participating in precision medicine.”

“Importantly, the partnership will allow each organisation’s respective initiatives to be coordinated with other consumer activities underway, to maximise the benefit from and minimise the burden of, consumer involvement on patients and families.”

About Luminesce Alliance

Luminesce Alliance is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, the Children’s Cancer Institute, the University of Sydney and the University of New South Wales Sydney. It has been established with the support of the NSW Government to coordinate and integrate paediatric research.

Psychosocial Research is one Luminesce Alliance five ‘Enabling Platforms’. The Psychosocial Platform looks at the psychosocial implications for children and their families of precision medicine and genetic testing, and how to support and educate healthcare professionals in delivering precision medicine.

About ChildUnLimited

ChildUnLimited is a national network of researchers, clinicians, young people and families working together to improve the lives of children with chronic illness and disability. At its core is a Consumer Board, made up of 12 parents and young people with lived experience of chronic illness and disability.  ChildUnLimited  has recently appointed a young person’s consumer group with the aim of ensuring consumers are involved at all stages of the research pathway. For more information visit www.childunlimited.org/

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Bridging the gap between medical science and personal experience

A series of six ‘Finding a Way’ positive psychology video resources is helping to bridge the gap between medical science and the personal experience of parents who care for young children with severe epilepsy and other serious brain disorders.

With the support of Luminesce Alliance, the videos were developed by Dr Suzanne Nevin in collaboration with clinicians and researchers from the School of Clinical Medicine UNSW and the Paediatric Epilepsy Network New South Wales (PENNSW) (Prof Annie Bye, Fleur LeMarne, Erin Beavis, Rebecca Macintosh, Prof Claire Wakefield, Dr Rani Sachdev, Dr Elizabeth Palmer and Prof Kenneth Nunn). The videos reflect different stages, joys and heartache experienced by families.

The suite of videos, released in March 2022 across Sydney Children’s Hospitals Network, have proven to be a valuable resource for parents, families and clinicians caring for children with severe brain disorders.

More than 160 caregivers from 18 countries reviewed the resources, with 56 caregivers completing over 85% of the evaluation. Caregivers rated the resources as highly acceptable and relevant to their experiences with caregivers reporting that the resources normalised their emotional experiences and provided helpful suggestions about managing their personal relationships, seeking support and accepting help from others.*

“They resonated with me, right from video one. They put into words exactly how I felt through this journey. I actually nearly cried in the second video as I felt someone gets it. That’s me. I also loved how it describes how others cope with the diagnoses and gave me a better understand of my husband’s role”

“The practicality of each video. Parents need permission to grieve and hear these videos from the beginning of their journey. The medical field is all parents initially get but don’t receive any emotional, spiritual support.”

“They were beautiful. I’m literally in tears as I write this, I wish I’d had access to something similar 4 years ago when we got our child’s diagnosis, but I’m grateful for them today, they’re still just as relevant today as they would have been back then. Thank you.”

“I was looking for answers on this topic since my son was born, but I couldn’t find them. I really appreciate there is enough money and effort for parent’s mental health.”

The videos contribute to Luminesce Alliance Psychosocial Research Enabling Platform programs to improve the understanding of how patients, carers and health professionals deal with the challenges of the introduction of precision medicine, such as the risk of unrealistic expectations and understanding the implications of genetic screening for the extended family.

To ensure that all children and young people benefit from precision medicine, Luminesce Alliance extend research beyond the laboratory to address the psychosocial risks of precision medicine and ensure its equitable rollout.

Luminesce Alliance is one of the first organisations in the world to examine the psychosocial impacts of precision medicine. Our insights contribute to world leading collaborative psychosocial research in childhood genetics.

Psychosocial approaches to medicine look at patients’ and families’ experiences, understanding and communication around treatment, the surrounding social environment, and how these combine to impact the physical and mental wellness of individuals.

Psychosocial Research is one of five Luminesce Alliance ‘Enabling Platforms’. The Psychosocial Platform looks at the psychosocial implications for children and their families of precision medicine and genetic testing, and how to support and educate healthcare professionals in delivering precision medicine.

New techniques, such as whole genome sequencing, are rapidly changing our understanding and treatment of cancer, rare disease and neurodevelopmental disorders such as epilepsy, however the potential impacts of paediatric precision medicine programs on the psychosocial wellbeing of families are poorly understood.

Our researchers identify common impacts of, and barriers to, precision medicine, and develop educational resources for families and health care professionals.

Links to video resources:

*Publications:

Nevin SM; Wakefield CE; Le Marne F; Beavis E; Macintosh R; Sachdev R; Bye A; Palmer EE; Nunn K, 2022, ‘Piloting positive psychology resources for caregivers of a child with a genetic developmental and epileptic encephalopathy’, European Journal of Paediatric Neurology, 37, pp. 129 – 138, http://dx.doi.org/10.1016/j.ejpn.2022.01.022

 

About Luminesce Alliance 

Luminesce Alliance is a not-for-profit cooperative joint venture between the Sydney Children’s Hospitals Network, the Children’s Medical Research Institute, the Children’s Cancer Institute, the University of Sydney, and the University of New South Wales Sydney. It has been established with the support of the NSW Government to coordinate and integrate paediatric research. www.luminesce.org.au

About UNSW Sydney 

UNSW Sydney is a global top 20 university, known for innovative, pioneering research and high-quality education with a global impact. Since our foundation in 1949, our aim has been to improve and transform lives through excellence in research, outstanding education and a commitment to advancing a just society. https://www.unsw.edu.au/

About Sydney Children’s Hospital Network

Sydney Children’s Hospitals Network is the largest paediatric health entity in Australia, with a team of 8,000 staff committed to providing world-class paediatric health care in a family-focussed, healing environment. https://www.schn.health.nsw.gov.au/

 

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The first-ever Inherited Retinal Disease Patient and Family Day a resounding success

Image L-R: Professor Robyn Jamieson, Arato, Nas Campanella, Jenna Jones

Luminesce Alliance was delighted to attend the first-ever Inherited Retinal Disease Patient and Family Day on 24 March 2024. The day was a resounding success, attracting more than 120 participants from NSW, Victoria, South Australia, Queensland and New Zealand.

The day provided an opportunity for patients and families to share their experiences, hear the latest research and learn about the path from diagnosis to treatment, and to connect with others with lived experience.

It was especially valuable to hear the lived experience of our panel including ABC journalist Nas Campanella, Paralympian Jenna Jones and Jeans for Genes ambassador Arato.

Professor Robyn Jamieson and A/Prof Anai Gonzalez Cordero talked about their work in eye genetics and stem cell medicine before engineer Santiago Velasquez from EyeSyght talked about using technology to improve accessibility.

“The interaction with patients is tremendously beneficial to our researchers. This has been great for them to understand the impact that their work can have in real life,’’ A/Prof Gonzalez Cordero said.

The day ended with discussion on living with vision impairment. Paralympic swimmer Jenna Jones encouraged parents to make their children more independent.

“Just because I have support doesn’t mean I’m not living an independent life. It’s important to teach your kids to advocate for themselves and ask friends for help,’’ she said.

The day was hosted by the Behavioural Sciences Unit at UNSW and the Stem Cell Medicine group at the Children’s Medical Research Institute, with the support of Medical Research Future Fund (Australian Government Department of Health and Aged Care), UNSW Medicine and Health and Luminesce Alliance.

Video Resources:

Welcome Address from the Hon Mark Butler MP

An introduction to Inherited Eye Diseases

Current and future diagnosis and management of Inherited Eye Diseases

An introduction to advance therapies for Inherited Eye Disease

Recreating the disease in the lab

Gene therapy: a Luxturna implementation example

How far can you go …in the shoes of a blind man?

Panel discussion

Playlist of all videos

 

 

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