Save Our Sons Duchenne Foundation is the peak body for Duchenne muscular dystrophy in Australia to give hope and change lives.
Sydney, Australia
Joined May 2010
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Save Our Sons Duchenne Foundation retweeted
Thank you Rachel @RachelK11 we are so grateful to the owners, trainer and yourself for making a real difference by selecting Save Our Sons Duchenne Foundation as your charity for the Golden Eagle. As the CEO of #SOSDF and behalf of all the Duchenne community, BEST OF LUCK.
Save Our Sons Duchenne Foundation retweeted
Thank you so much for the story @RayThomas_1 @dailytelegraph @adrianlayt @SaveOurSons the count down is on for the Golden Eagle 🦅 @aus_turf_club
Save Our Sons Duchenne Foundation retweeted
Overpass will be running for Save Our Sons duchenne foundation on Saturday in the Golden Eagle 🦅 and has drawn barrier 3. @BBakerRacing @RachelK11 @Darby_Racing the best of luck to you all we'll be cheering you home. 🤞🍀🦅 – at Sydney, New South Wales
Save Our Sons Duchenne Foundation retweeted
Congratulations @klair_bayley and @SaveOurSons on your advocacy and drive.
Save Our Sons Duchenne Foundation retweeted
Fantastic words about our Director of Services, Roxanne Higgins who presented over the weekend.
#EverydayLearningandTherapy
Thanks to psychologist Roxanne Higgins @NoahsArkAus for bringing to light the incredible work being done by therapy practitioners delivering strength based and family centred services grounded in the Transdisciplinary Key Worker model.
#sosduchennefoundation
#ACTTConference2020
Save Our Sons Duchenne Foundation retweeted
Emma Heslop, our DMD Hub manager, is attending @SaveOurSons #ACTTconference2020 in Australia.
Tomorrow, Emma will present at the conference about the DMD Hub.
#sosduchennefoundation
Save Our Sons Duchenne Foundation retweeted
#Santhera are proud to support the @SaveOurSons Duchenne Foundation ACTT Now conference presently taking place in Melbourne. Important discussions about advocacy, clinical care, trials & therapies! #duchenne #dmd #SOSDuchenneFoundation
Kicking off Day 1 of the ACTT Now conference. Over the next 2 days, the Duchenne community gather to further understand the changing landscape of Duchenne here in Australia.
#sosduchennefoundation
#TogetherWeAreStronger
Save Our Sons Duchenne Foundation retweeted
Workshop report on the role of brain dystrophin in #musculardystrophy now available, discussing the implications for clinical care and translational research.
The lay report of the 249th ENMC workshop on Brain Dystrophinopathy is now available: bit.ly/2PtOldW. Also many translations for your local dissemination were made thanks to several workshop participants!
Save Our Sons Duchenne Foundation retweeted
Panel debate addresses tricky questions for parents and patients with #NeuromuscularDiseases : whether to wait for future CRISPR trials or participate in the studies available now? #TNMD19
Save Our Sons Duchenne Foundation retweeted
One hypothesis @cgersbach is presenting is, how might low levels of gene therapy lead to sustained dystrophin production in patients with Duchenne Muscular Dystrophy (and thus have long-term impact)? #TNMD19
Charles Gersbach presenting now on genome editing (CRISPR CAS9) for Duchenne and other neuromuscular disorders #tnmd19
Save Our Sons Duchenne Foundation retweeted
Explaining CRISPR technologies to the public and tempering expectations is made v. difficult by media hype around gene editing! Worrying, as in truth, major concerns remain for #DMD for instance, in terms of delivery and safety @oligogirl #tnmd19
Save Our Sons Duchenne Foundation retweeted
.@oligogirl explains beautifully (as always!) how AON therapies can turn more severe #NeuromuscularDiseases to less severe disorders, by creating at least partially-functional proteins #TNMD19
Save Our Sons Duchenne Foundation retweeted
"Success stories around oligonucleotide therapies, although wonderful, can raise unrealistic expectations for patients and families with #RareDiseases : so we need careful oversight" - @oligogirl #TNMD19
Save Our Sons Duchenne Foundation retweeted
Next up - @oligogirl of @TREAT_NMD and @LUMC_Leiden presenting status quo of advanced genetic therapies for #NeuromuscularDiseases #TNMD19
Save Our Sons Duchenne Foundation retweeted
Next personalised therapy plan underway - how to scale this to the estimated 3M patients who could benefit? #tnmd19 Great presentation from Jinkuk Kim @BostonChildrens
Save Our Sons Duchenne Foundation retweeted
Mila's story (presented in @TREAT_NMD conf this morning) illustrates importance of being able to access experimental treatment (milasen) before authorisation where situations are life-threatening : adaptive routes to access crucial for some #rarediseases #tnmd19
Save Our Sons Duchenne Foundation retweeted
Hearing how #NextGenSequencing can bring definitive diagnoses (and rule out carrier status) for families with #rarediseases : and fast! So important for families seeking answers #tnmd19
Starting off with Jinkuk Kim presenting on developing a treatment for a single patient (milasen for mila, a patient with Batten’s disease ). #tnmd19
Save Our Sons Duchenne Foundation retweeted
Starting day 2 of @TREAT_NMD conference with a key topic of huge interest in #rarediseases - personalised medicine #tnmd19
Save Our Sons Duchenne Foundation retweeted
Craig Campbell talking about TREAT-NMDs response to providing solutions for Post Marketing Surveillance data collection.
