Press Release

$1.88M Grant to The University of Notre Dame Australia ( Perth) for a Phase 111 Trial of Sirolimus in patients with Inclusion Body Myositis, to slow or stabilise otherwise relentless disease progress.

The Myositis Association – Australia Inc is thrilled to learn of this wonderful grant from the Medical Research Future Fund just announced by Federal Health Minister Greg Hunt.

IBM is a disheartening and insidious condition. It’s relentless progression, causing loss of mobility, dignity and social connection presents a daily struggle. The lack of any effective treatment is a major unmet need and sadness for patients and families.

Our IBM members are motivated and excited by the hope of a breakthrough treatment. Our members have contributed to this funding journey – offering insights, often raw and heartfelt, describing the impact of IBM on their lives; advocating for funding assistance by attending meetings, requiring enormous personal physical effort and being open to engage with the clinical trial.

We’re fortunate in Australia to have an excellent and collaborative group of willing ‘Myositis experienced‘ doctors and researchers. Our patients are buoyed by the reality of an Australian led clinical trial. The opportunity to participate, across the country, in testing a potential treatment for IBM is truly a gift of hope. We’re all so very grateful to everyone involved in the grant process and especially the support of the Federal Government, The University of Notre Dame Australia, lead investigator Prof Merrilee Needham and Clinical Research Manager Kelly Beer

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Christine Lowe


Myositis Association- Australia Inc

Welcome to the Myositis Association Australia website. Whatever your interest in Myositis, we hope that your visit here enhances your understanding of the Myositis diseases, their management and the care and support needs of patients and families.

The Myositis Association-Australia Incorporated (Myositis Association Australia) is an organisation dedicated to:

• Providing a network of support for myositis patients and their families;
• Assisting myositis patients to manage their condition;
• Reducing isolation with newsletters, meetings and events where people can access information and share experiences;
• Supporting research to help find a cure for myositis or improve the quality of life of myositis patients;
• Promoting awareness for myositis to the health profession and the general public.