About Mic Zagami

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So far Mic Zagami has created 26 blog entries.

Duchenne Breaks Hearts Literally

Save Our Sons Duchenne Foundation continue to make cardiac care a priority in its programs and research efforts. On Valentines Day we raise awareness that ‘Duchenne breaks hearts literally, because the heart is a muscle too’. Currently, even with improved respiratory care and surveillance, cardiac muscle deterioration is still the leading cause of death in

Duchenne ACTT Now Conference Program Announced

Save Our Sons Duchenne Foundation is hosting a two-day conference in Sydney on September 6 and 7, 2018. This conference is aimed at the Duchenne community, families and those living with Duchenne and professionals including clinicians, nurses and allied health, researchers, industry and those involved in the regulatory process for new treatments. We will provide

Promising results from Duchenne designer steroid clinical trial

ReveraGen BioPharma has released initial results from their clinical trial of Vamorolone, a ‘designer corticosteroid’ with the potential to cause fewer side effects and produce greater benefits than other steroids that are commonly prescribed to slow the progression of Duchenne muscular dystrophy. The trial is involving 48 young boys with Duchenne worldwide, and thanks to

Network worth $1.365 million launched to put Australian Duchenne patients on the map

Save Our Sons Duchenne Foundation has marked their 10th anniversary by announcing their newest program in the fight for a cure – Duchenne Network Australia. A cheque for a staggering $1,365,000, was presented to Associate Professor Kristi Jones from the Institute Neuromuscular Research (INMR) in Sydney at the Save Our Sons Gala held at the

Impressive first results from Duchenne gene therapy trial

Sarepta Therapeutics has announced impressive preliminary results from their gene therapy trial. Results from the first three patients, 90 days after treatment, have been released. Strong dystrophin production was seen in the boy’s muscles and large reductions in creatine kinase levels in the blood were seen. Creatine kinase is an enzyme that leaks into the

Gene therapy trial given the green light to continue

Solid Biosciences has been given the green light to continue their Duchenne gene therapy trial. The FDA originally placed a hold on the trial in March this year because the first patient dosed with the gene therapy experienced a serious adverse event which was picked up in blood tests. This was identified early and well-managed

PATIENT REGISTRY STEPS IT UP A GEAR

Sydney, AUSTRALIA, May 3, 2018. The Duchenne Registry Australia, formerly DuchenneConnect Australia, has implemented new features and tools to help enhance the user experience and increase its capability to improve access to new treatments, clinical trials and gold standard levels of care for Australians with Duchenne muscular dystrophy. The changes coincide with a milestone celebrated

Raising awareness in the Ministry

Important meetings today in Melbourne with Professor Monique Ryan at The Royal Childrens Hospital, and then with the Federal Health Minister Hon Greg Hunt MP at the Commonwealth Parliamentary Offices. The Minister met with Save Our Sons Duchenne Foundation, as part of our collaboration with the International Centre For Community Driven Research. Alongside our inspiring

Pfizer Phase 1b clinical trial news

Pfizer has advised Save Our Sons Duchenne Foundation today, that they have initiated a Phase 1b clinical trial for its mini-dystrophin gene therapy candidate, PF-06939926, in Duchenne, with the first boy receiving an infusion of the mini-dystrophin gene on March 22 at Duke University Medical Center. There will be an anticipated 4 additional sites in