Sydney Children’s Hospital

Lenity Australia is a not for profit philanthropic organisation financing medical research and clinical care projects in Australia.

In addition, humanitarian support programmes and relief for victims of war and natural disasters in Asia and the Pacific. Whilst Lenity does not seek donations from the public, the charity provides funding that meets the requirements of the Australian Government. Lenity is accredited with the Australian Taxation Office for tax deductibility.

Sydney Children’s Hospital

GENEie - A paradigm shift in the diagnosis of genetic disorders and inherited cancers

Genetic diseases are individually rare but collectively common, with inherited disorders accounting for half of all admissions and expenditure within Children's Hospitals worldwide. GENEie can diagnose Splicing Variants better than any other predictive methods. ldentifying the genetic basis of disease is the most important step for any clinical process. Preventative medicine is arguably the most significant outcome from diagnoses that GENEie helps to provide and its value for families cannot be underestimated. GENEie fills an exponentially expanding and critical need in genomic medicine, which will impact families with genetic disorders around

the world.

STOP2 -Early treatment in infants with an mTOR inhibitor that aims to cure Tuberous Sclerosois

Children with Tuberous Sclerosis Complex (TSC) can develop serious and devastating complications. There is a critical window of time to completely change the clinical outcome for these children and prevent these complications developing. The STOP2 Study aims to improve the lifetime outcomes of children with TSC by early treatment with mTOR inhibitors that target the underlying genetic pathway restoring its activity at a critical time of brain development. We need to know if this approach can change the lives of children with TSC and avoid needless suffering for these children and their families.

ZERO - Care to Cure; the momentous journey towards curing childhood cancer

Three children a week currently die from cancer. With the launch of the Zero Childhood Cancer programme, The Children’s Cancer Institute and the The Kids Cancer Centre at Sydney Children’s Hospital, will move significantly closer to their goal of ‘zero’ cancer. Zero Childhood Cancer will benefit all children with cancer, because for those children who do survive, 70% will suffer lifelong side effects because of toxic treatments: the best we currently have to offer. 30% of these side-effects result in chronic conditions including heart conditions, cognitive disorders, metabolic disorders, infertility or secondary cancers not caused by the primary cancer but by the very treatment given to cure. The learnings from Zero Childhood Cancer will help to find safer, more effective treatments for all children with cancer so they can survive healthier and for longer.

Sydney University

Accelerating Therapeutic Innovations for Neurodegenerative Disorders

As populations worldwide continue to age, neurodegenerative disorders are becoming increasingly prevalent. Innovative research will play a crucial role in alleviating the devastating impact on those affected and help to reduce the huge economic and social cost these disorders place on communities. The Brain and Mind Centre is a leader in brain and mind research and draws on an extensive network of academic experts, industry partners and collaborators to ensure it remains at the forefront of new discoveries in neurodegenerative research. Its aim is to tackle this significant health burden head on and revolutionise the diagnostic, treatment and care options available for patients, carers and families.

Harnessing the power of telehealth to drive remission of Type 2 diabetes in regional and remote Australia

Should we fail to take decisive action to stem Australia’s diabetes epidemic, the public health and financial implications will be serious. Quality of life will be reduced for millions, and the associated costs have the potential to threaten the country’s future prosperity. This project is aiming to prove the effectiveness of telehealth consultations with respect to intensive lifestyle interventions over the next three years. An easy-to use website and app will be developed to complement the work of the health professionals who will be meeting with the study participants in group telehealth sessions. Associate Professor Hocking is confident consistent appointments with nutritionists and the support of an easy-to follow and low-cost lifestyle program will ensure high levels of participation, which in turn will lead to high levels of remission. The research team are planning to engage with Aboriginal health centres, so First Nations people will be represented in the cohort.

Using digital health to improve osteoarthritis outcomes

Osteoarthritis (OA) is a global public health problem with no cure. It is the 12th highest contributor to worldwide disability and is Australia’s leading cause of chronic pain. Digital health, such as the use of wearables, smartphones and websites may help people with osteoarthritis adopt healthier behaviours. Sydney University have developed a digital health coach app and will run a pilot test in 2024. For the app to be accepted and widely used, evidence must be generated that the digital coach is effective, as well as cost effective. Ideally, this comparison would be made to other evidence-based forms of managing OA.

Australian Marist Solidarity

Australian Marist Solidarity (AMS) is the international agency for the aid and development work of the Marist family in Australia throughout Asia and the Pacific Islands. AMS works with the people in this region on a combination of long-term and short-term development projects, in fact 50 in total in up to 15 countries. These projects aim to develop or support locally sustained education opportunities for the young people in these regions. Lenity provide on-going support for AMS projects in India, Solomon Islands, Papua New Guinea, Timor Leste and Bangladesh. These projects range enormously such as donations for water tanks, nutrition, essential goods, aid for families affected by HIV, computer literacy, classrooms and emergency shelter. AMS also provide support via Lenity for rehabilitation for the blind, provision of satellite internet and support for refugees and people affected by war.

Maluk Timor

Maluk Timor has been working in Timor-Leste since 2012, in government-run health centres, alongside Timorese health workers, and in close partnership with the Timorese Ministry of Health to prevent and treat some of Timor's most devastating diseases and target critical health workforce gaps.

The focus is on capacity building and health systems strengthening to ensure Timorese people have quality healthcare, in particular the training and development of a highly skilled national health workforce; the treatment, prevention and control infectious diseases; the improvement of accessibility of health facilities; educating people to improve their health and wellbeing and positively changing community attitudes towards healthcare.

The main areas of focus are:

Women's health, maternal and child nutrition
Oral health
Rheumatic heart disease
HIV
Tuberculosis

Lenity’s funding will be used mainly to support oral health. Maluk Timor will develop modules for two training packages for continuous professional development, conduct a training programme on Silver Diamine Fluoride use for 12 Ministry of Health and INGO participants and expand the Silver Diamine Flouride school based outreach at select schools in rural Likisa.

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