maya

About Maya

This author has not yet filled in any details.
So far Maya has created 18 blog entries.

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

SOSDF Enhancing Quality-of-Life (EQOL) Program

Due to the full implementation of the National Disability Insurance Scheme (NDIS) coming to fruition across all Australians States and Territories, where participants receive accurate advice and the services of experienced and knowledgeable planners, the NDIS Plans for persons with Duchenne and Becker muscular dystrophy should incorporate most of the relevant items which they previously

Duchenne Finch Animation

2 September 2020   DISCLAIMER: Internationally acclaimed and renowned Australian film production company Finch have created an emotional animation about Duchenne for use by Save Our Sons when advocating to key decision-makers and influencers about the urgency of meaningful action to secure a cure. It is advised that due to the content parents and carers

Photos and Video Messages: Support from Federal Members of Parliament

2 September 2020   Federal Members of Parliament support our cause! Save Our Sons have secured the attention and support of key Parliamentarians in our quest to find a cure for Duchenne and Becker muscular dystrophy. Keep a close eye on our upcoming announcements in relation to very impactful measures Save Our Sons have been

Save Our Sons Duchenne Foundation Keynote Report

1 September 2020   Save Our Sons commissioned the McKell Institute and Equity Economics to produce a keynote Report highlighting the main issues and challenges facing families of children and adults with Duchenne and Becker Muscular Dystrophy in Australia as they wait for a cure. The Report helps to better understand how Duchenne and Becker

NS Pharma’s VILTEPSO™ (viltolarsen) injection Now FDA-Approved in the U.S. for the Treatment of Duchenne Muscular Dystrophy in Patients Amenable to Exon 53 Skipping Therapy

13 August 2020   VILTEPSO (Vitolarsen) injection has been approved by the FDA for US patients, for the treatment of Duchenne Muscular Dystrophy (DMD) patients who have a confirmed mutation of the DMD gene that is amenable to exon 53 skipping therapy.   NS Pharma advised that VILTEPSO is the first and only exon 53

FibroGen Announces First Patient Enrolled in Pamrevlumab Phase 3 Clinical Trial in Patients with Duchenne Muscular Dystrophy

Fibrogen Inc. recently announced the initiation of a Phase 3 placebo-controlled trial of pamrevlumab in combination with systematic corticosteroids. Pamrevlumab is an antibody developed by FibroGen to inhibit the activity of CTGF, a common factor in disorders characterized by organ dysfunction and failure.   The main objective of this study is to evaluate the effect