Muscular Dystrophy Foundation Australia | Non-profit organisation

Muscular Dystrophy Foundation Australia

Phone: 0430404332

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25.01.2022 Calling All SA Neuromuscular Community...Love sport? Want to join in on the fun? Please connect via the link below. https://www.oneculturefootball.org/powerchairfootball

23.01.2022 Great news for families with children or infants diagnosed with SMA!

22.01.2022 ANNOUNCING THE LOOP: YOUR NEUROMUSCULAR RESOURCE HUB! Muscular Dystrophy Foundation Australia has today unveiled the name and logo of its Neuromuscular Digital Resource which is currently in development. The Resource will be called The Loop: Your Neuromuscular Resource Hub. Funded through an NDIA Information, Linkages and Capacity Building grant, The Loop will be an online, integrated and accessible resource to strengthen the capacity and skills of Australians living with... muscular dystrophy and neuromuscular conditions, their families and carers. ‘The Loop’ was chosen as the Resource’s name to reflect an inclusive space designed to promote connection. MDFA wanted to create a sense that this is a hub for likeminded people to learn and share, to get ‘in the loop’ with relevant news, opinions and much more. Navigating change is hard, but it’s easier when you can feel a sense of empathy and connection with other people. The Loop’s logo design allows for various interpretations. It can be seen as two overlapping speech bubbles which are looping in and out of itself, representing how the hub will connect, inform and help the community. It’s also a weaving path representing life’s journey or learning curve which is never straightforward. The Loop’s name and brand design have been developed by project partner Meerkats in collaboration with MDFA’s project team, CEOs from Muscular Dystrophy organisations from around the country and the project’s Community Reference Group, made up of members of the neuromuscular community. The Loop is a real space between life’s learning curves, where you can prepare and share every step and find your voice with voices just like yours. Follow The Loop - Your Neuromuscular Resource Hub on Facebook to keep up to date on the project's launch!

16.01.2022 Love your work, Charlotte!

15.01.2022 We are thrilled to be launching The Loop - Your Neuromuscular Resource Hub today. The Loop is the product of our Neuromuscular Digital Resource Project, funded by an NDIS National Disability Insurance Scheme ILC grant, and developed by MDFA with our state-based partners. The Loop is an accessible website and forum that connects you with health and wellbeing information and your neuromuscular community. You can like The Loop's Facebook page for updates, and join us for a live stream launch event at 3pm on YouTube: https://youtu.be/1QWAW2P35nk

15.01.2022 It's taken over two years, a lot of Zoom calls, thousands of emails, plus surveys, workshops, focus groups, feedback reviews - but THE LOOP IS NOW LIVE! The conversation is now open to join. We can't wait to welcome you to The Loop! www.theloopcommunity.org

14.01.2022 The Loop is a brand spanking new national online resource hub for the neuromuscular community & has loads of info on all things MD/NMC related The site will launch on May 27 at 1pm WA time so tune in to the live stream event via this link http://ow.ly/Hfhb50zizrd Lock it in Eddie!

14.01.2022 Today is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. The theme of this year's awar...eness day is 'Duchenne and the brain'. Did you know that the same protein that is missing in the muscle causing muscle breakdown, is also missing in the brain resulting in additional complications for those with the condition. In raising awareness this year we hope for early and appropriate testing, more research and better care on this aspect of the disease. [SOURCE: www.worldudchenneday.org]

12.01.2022 We are proud to announce our support of Biogen, with SMA Australia and Paralympian Dylan Alcott for the inaugural launch of the Trailblazer Challenge! This upcoming hackathon in September will bring much-needed support, awareness and solutions to the everyday challenges faced by the adult SMA community. Hear from Dylan in the video below to find out more and how you can make your submission today! ... #SMAawareness #getinvolved #beSMAaware #hackathon #DylanAlcott

11.01.2022 THE LOOP is live!! We'd love you to check it out and connect up.

09.01.2022 PUTTING THE CALL OUT: We're producing a series of videos for The Loop, a couple of which will be in the style of ABC TV's "You Can't Ask That". The videos will... be broadly focused on feelings of vulnerability and keeping connected, but we're hoping to cover lots of ground. We'd love your input - so what are some of the annoying questions people ask you all the time? Share your questions in the comments and keep an eye out for the videos - coming to The Loop later in 2020!

08.01.2022 The Loop will go live on Wednesday 22 April 2020. Make sure to follow The Loop - Your Neuromuscular Resource Hub to stay in The Loop about announcements like this!

06.01.2022 How has this COVID-19 period affected you? We want to know! Our group of organisations dedicated to serving people with muscular dystrophy and similar conditions are working together to understand your experience during COVID-19. The results will assist our ability to provide additional support to the neuromuscular community and strengthens our advocacy to federal, state and local government agencies for people living with a neuromuscular condition.... Please fill out the survey below to help shape how we provide support in the future.

06.01.2022 Today is International Day of People with a Disability! The theme for IDPwD 2020 is Building Back Better: toward a disability-inclusive, accessible and sustai...nable post COVID-19 World. In keeping with this year's theme, today we're releasing the findings of our recent survey into the experiences of people living with neuromuscular conditions through the COVID-19 pandemic. You can view the report on The Loop: https://theloopcommunity.org//covid-19-and-its-impact-on-p International Day of People with Disability - Australia

05.01.2022 Very exciting to be reaching this milestone in the Neuromuscular Digital Resource Project!

05.01.2022 Today is World Duchenne Awareness Day The team at Save Our Sons Duchenne Foundation has celebrated World Duchenne Awareness Day with a morning tea this morning ...in honour of all boys and rare girls living with Duchenne and Becker muscular dystrophy. Special thoughts to the families in our community who have lost a loved one to the conditions. We will continue to work tirelessly to contribute meaningfully towards achieving a cure. About Duchenne Awareness Day World Duchenne Awareness Day (WDAD) is held on the 7th September to raise awareness for those affected by Duchenne and Becker Muscular Dystrophy. The date of WDAD (7/9) refers to the 79 of the exons of the dystrophin gene. This is the same gene responsible for producing the dystrophin protein, in charge of maintaining muscle cell structure and function. Duchenne occurs due to a mutation in the dystrophin gene, consequently the protein is not produced. As a result, muscles are not able to function or repair themselves properly, over time this compromises muscle function completely. Each year for World Duchenne Day there is a special theme; 2020 is focused on Duchenne and the Brain. The reason for exploring this area, follows; the dystrophin protein missing in the muscle causing muscle breakdown, is also missing in the brain. This can cause problems like learning difficulties and behavioural issues such as ADD, ADHD, OCD and autism. For many families, these issues result in more stress and worries in daily life than the physical problems. This year we want to raise greater awareness around this phenomenon and educate parents, young boys, and the wider community on the link between Duchenne and the brain. #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

05.01.2022 The Loop - Your Neuromuscular Resource Hub will now go live on Wednesday 27 May!

05.01.2022 Early diagnosis enables the best clinical care, treatment options, access to services, peer support, increased reproductive confidence and access to participati...on in clinical trials. Yet diagnostic delay and misdiagnosis is common in rare diseases. Thirty per cent of Australian adults living with a rare disease are impacted by a diagnostic delay of more than five years, while almost half have received at least one misdiagnosis. See the National Strategic Action Plan for Rare Diseases for more information about Pillar 2: Care and Support: https://bit.ly/2O4ENV6

05.01.2022 We're excited to announce our new Services Directory is now online! The Services Directory allows you to search for service providers in your area - whether th...at's a physio, occupational therapist, equipment provider or sports body. Our hope is that this directory will be built by the neuromuscular community, for the neuromuscular community so we encourage you to jump on in and add some service providers that you recommend to get the ball rolling. As a Loop user, you can submit your recommendations using the form at the bottom of the page and show your support for a provider by 'clapping' This is your opportunity to share your recommendations and discover great service providers in your area

05.01.2022 What has been your experience living with a neuromuscular condition during COVID-19? We want to know! Our group of state-based Australian organisations dedicated to people with muscular dystrophy and similar conditions are working together to understand your experience during COVID-19. ... We've put together this survey to find out more about your experience. The results will assist us to provide strengthened advocacy to federal, state and local government agencies for people living with a neuromuscular condition.

05.01.2022 The Loop app is now available for download on the Google Play and Apple App stores!

05.01.2022 We're excited! Our digital resource project funded by a grant from the NDIA is being launched online next week. We invite you to join us in the celebration. See details below for a link to the Youtube live event.

04.01.2022 Today's date references the 79 exons of the dystrophin gene - which is why it's World Duchenne Awareness Day. It's one of the most common forms of childhood MD & affects 1 in 3,500 live male births. Let's bring some more awareness around this condition by sharing

04.01.2022 We reached another exciting milestone in The Loop's development today: moderator training! Say hello to your Loop Moderation Team! The Moderation Team is ma...de up of staff from Muscular Dystrophy WA, Muscular Dystrophy NSW, Muscular Dystrophy Queensland and Muscular Dystrophy Foundation Australia. See more

03.01.2022 Muscular Dystrophy Foundation Australia has welcomed a new General Manager, Ryan Talsma! Ryan’s career has traversed both public and private sector roles. His public sector experience includes more than a decade’s experience working in senior manager roles across Federal, state and local government agencies. Ryan also has eight years’ experience in management consulting servicing clients across Australia and internationally. His experience in this context includes holding r...oles in top tier firms most recently as a Managing Director with FTI Consulting Inc. and earlier as an Associate Director with Deloitte. Ryan enjoys working for the benefit of a cause. He considers his role as General Manager of the Muscular Dystrophy Foundation focused entirely on improving the lives of people with neuromuscular conditions as an enormous privilege. MDFA extends our heartfelt thanks to outgoing General Manager Nadelle Manners, whose work in this role has made an enormous contribution to the neuromuscular community over the last five years.

01.01.2022 Don’t forget to make a video submission to the Trailblazer Challenge virtual hackathon event in September! Is there an everyday challenge you would like to be considered for the hackathon? Whether it’s navigating the kitchen, getting dressed or travelling to work or study, your input will help shape the hackathon and the solutions to address what’s most important to you. Check out Paralympian Dylan Alcott’s video to find out more! ... #SMAawareness #getinvolved #beSMAaware #hackathon #DylanAlcott