maya

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So far Maya has created 26 blog entries.

Commonwealth Inquiry Into Independent Assessment for NDIS

Dear members of the Duchenne and Becker community.   You may recall that just prior to Christmas we advised of a community consultation process which was being undertaken by the NDIA into some proposed changes to the NDIS (NDIS Consultation - Save Our Sons Duchenne Foundation). One of the changes proposed was the introduction of

NDIS Consultation

You may be aware that the National Disability Insurance Scheme (NDIS) is currently undertaking a consultation process with NDIS participants and providers about a number of changes which are proposed to improve the scheme and make it more flexible and easier for users to navigate and secure services. Three papers have been recently released by

Funding towards the position of Neuromuscular Clinical Trials Staff Specialist Neurologist, held by Dr. Ian Woodcock.

Murdoch Children’s Research Institute (MCRI) - Royal Children’s Hospital Melbourne Funding towards the position of Neuromuscular Clinical Trials Staff Specialist Neurologist, held by Dr. Ian Woodcock. Clinical trial activities, such as patient assessments, safety monitoring, and data review, are increasingly time-consuming, and there has in recent years been a rapid increase in the number and

Catabasis Pharmaceuticals Announces Top-Line Results for the Phase 3 PolarisDMD Trial of Edasalonexent in Duchenne Muscular Dystrophy

Catabasis Pharmaceuticals has announced the end of the Phase 3 PolarisDMD trial of edasalonexent in Duchenne muscular dystrophy. Edasalonexent is a novel oral investigational drug which inhibits NF-kappa B, a pathway activated in DMD patients from infancy. The trial has not met its primary endpoint to measure the change in North Star Ambulatory Assessment (NSAA)

Commonwealth Parliamentary Inquiry New Drugs and Novel Medical Technologies

Save Our Sons have lodged a comprehensive submission to this most important Parliamentary Inquiry.   As the peak body representing the Duchenne and Becker muscular dystrophy community in Australia, we are proud that our advocacy played an instrumental role in the establishment of this Inquiry and our submission was written after extensive consultation with members

Alex Scollard Memorial PhD Scholarship

Save our Sons Duchenne Foundation have awarded the inaugural Alex Scollard Memorial PhD Scholarship to Dr Rajiv Wijesinghe.   Dr Wijesinghe will undertake a PhD Scholarship in the Neuromuscular field with specific benefit for the Duchenne and Becker muscular dystrophy community in Australia.   The late Alex Scollard was a true inspiration and great role-model for

Save Our Sons Duchenne Foundation Nurses Program – The Royal Children’s Hospital in Melbourne

The Save Our Sons Duchenne Foundation Nurses Program was developed to ensure “Best Practice” clinical care for all with Duchenne and Becker muscular dystrophy and facilitate bringing clinical trials to Australia and coordinate Australian-based clinical trials for persons with Duchenne and Becker muscular dystrophy.   The Nurses also provide coordinated care for Duchenne and Becker

Duchenne & Becker muscular dystrophy, a guide for NDIS Planning

Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living with Duchenne (DMD) and Becker (BMD) Muscular Dystrophies.   Marguerite currently provides support coordination and specialist and behaviour support for the neuromuscular community in South

Save Our Sons Duchenne Foundation Submission to the Federal Department of Education, Skills and Employment. 2020 Review of the Disability Standards for Education 2020

SOSDF thanks the Duchenne and Becker community for your active participation and critical contribution to our wide ranging submission to the 2020 Review of the Disability Standards for Education 2005.   Our submission may be downloaded through the following link: 2020 Review of the Disability Standards for Education 2005   If you would like a