Duchenne Australia

Happy New Year from Duchenne Australia! As we step into 2025, we want to extend our heartfelt gratitude to our community, supporters, and families who make everything we do possible. This year, we remain committed to creating brighter futures for those living with Duchenne and Becker muscular dystrophy as well as those closest to them. Together, we’ll continue to raise awareness, advocate for change, and support each other every step of the way. May 2025 be a great year for everyone! [Image description: A red square with the word “Happy” and “2025” at the top and bottom. In the middle is “New Year” in a script font. At the bottom is Duchenne Australia’s logo.] #HappyNewYear #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

The Duchenne Australia team wishes you all a very Merry Christmas and Happy New Year. We thank you for all your support in 2024, and a warm welcome to 2025. [Image description: The words “Merry Christmas” in a bigger red font above the words ‘Thank you from all of our team for your support in 2024!” and the Duchenne Australia logo. At the top are red Christmas decorations.] #MerryChristmas #Christmas #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

School holidays are here and now’s the perfect time to plan activities for your child. From sunny outdoor adventures to creative indoor fun, here are some ideas to make this summer memorable: For sunny days: ☀️ A trip to the park or beach with accessible paths and picnic areas ☀️ Nature walks on wheelchair-friendly trails ☀️ Hosting a backyard art session or water play day For rainy days or indoors: 🧸 Themed movie marathons (superheroes, animals, or space adventures) 🧸 Baking simple treats or decorating cookies 🧸 Crafting sessions with painting, colouring, or building models These are some activities that are inclusive, so every child can enjoy them! Let us know your favourite summer holiday ideas in the comments. [Image description: The image is of a boy and an adult playing in the park. The text in the top right says “Activities for these school holidays”. In the top left corner is a sun graphic.] #SchoolHolidays #Summer #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

While a registered support animal can be a great resource, the benefits of having a pet don’t require certification. All pets can have a huge impact on your child’s mental health, offering companionship, comfort, and emotional support. From lowering stress to improving mood, they can bring joy and stability to a child’s daily life, providing unconditional love and a sense of responsibility. Here are some pet breeds that are great for children with Duchenne: 🔵 Guinea pigs 🔵 Betta fish 🔵 Cats 🔵 Parakeets 🔵 Turtles (Review the regulations specific to your state for detailed information). These pets offer amazing companionship and are easy to manage and can help improve the well-being of people with Duchenne. Do you have a pet? Let us know their name and how they help you in your life! [Image description: The background image is of a child in a wheelchair playing with his dog. The text down the bottom right says “Did you know? | You don’t need a registered therapy animal to see the same benefits for your child.”] #SupportAnimal #AnimalTherapy #MentalHealthMatters #Pets #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

As sales season approaches with Christmas, it’s a good time to take advantage of deals while considering accessibility, especially for families with a child with Duchenne. Consider looking for discounts on items that support your child’s needs. These could include adaptive clothing and assistive devices, such as mobility aids or communication tools. Other things to look out for are sensory-friendly toys, such as weighted blankets or calming tools that can provide comfort and help manage sensory challenges. Additionally, think about items that can make caregiving tasks simpler, such as ergonomic furniture, easy-to-use household gadgets, or specialised tech accessories.  What are your tips for shopping for accessibility? Share them in the comments. [Image description: In the centre is a red price tag, and the words inside it say “A guide to accessible shopping”.]  #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

Give back this Christmas by donating to Duchenne Australia, to help the lives of people with Duchenne and their families. Your donation will help fund vital research, advocacy programs, and ultimately help improve the lives of those living with Duchenne across Australia. With an option for a one-off or monthly payment, your donation will help us continue to provide a better future for those impacted by Duchenne. Together, we can make a meaningful impact this Christmas and beyond. Click the link to make your donation: https://lnkd.in/g3KqMjUP. [Image description: The top image is of a mother and two sons, sitting in front of their Christmas tree. The words in the centre say “Give back this holiday season”. Just below the words, there are three images. The first is of the word “Donation”, the middle is of a young girl in a wheelchair, with her mother beside her, and the last one is of a child’s drawing of presents under a Christmas tree. The words in the bottom centre say “Donate to us this Christmas to help improve the lives of people with Duchenne, and their families. Your contribution supports our efforts to provide information, resources and advocacy for Duchenne.” Then encourage donations on the Duchenne Australia website.] #Donate #ChristmasDonation #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

Did you know about The Australian Neuromuscular Disease Registry (ANMDR)? If you are a person or family living with Duchenne, then you are eligible to enrol in the Australian Neuromuscular Disease Registry (ANMDR) based at the Murdoch Children's Research Institute (MCRI). The Australia wide registry collects medical information from patients, to improve the understanding of neuromuscular diseases and quicken the development of new therapies. There are many benefits of being involved. By having a database of patients with neuromuscular diseases, clinicians and researchers are better able to understand the underlying natural history of these conditions and how best to monitor and treat them. It also helps with recruitment into clinical trials and finding accessible clinics and services. Essentially, it is a place where patients, clinicians, researchers, and industry work together to discover new therapies and advance knowledge. As always, Duchenne Australia also continues to work closely with leaders in the medical fields as we all work towards research advancements for people living with Duchenne and their families. More information plus how to enrol with the ANMDR can be found on Duchenne Australia’s website: https://lnkd.in/giqYs9BB [Image description: In the right centre the words say “Did you know about The Australian Neuromuscular Disease Registry (ANMDR)? Patient-led registry for Duchenne and associated dystrophinopathies and other neuromuscular diseases.” Beside it is a graphic of a hand holding a phone.] #PatientAdvocacy #RareDiseaseResearch #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

Our friend Cameron Nicholls conquered the 80km Bondi to Manly Ultra Marathon, raising over $27,000 for Duchenne Australia🙌 ! We are so incredibly grateful of his mammoth achievement. Thanks Cam! [Image descriptions: Cameron competing in the Bondi to Manly Ultra Marathon as well as pictured with a friend's son who is in a manual wheelchair.] #CommunitySupport #FundraisingEvent #DuchenneFundraiser #CharityWalk #RareDiseaseAwareness #CharityEvent #CommunityLove #CommunityFundraising #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

Happy International Day of Persons with Disability! This day is of significant importance to us at Duchenne Australia as we take the time to acknowledge and celebrate our community. The day is also bigger than just the strength, resilience, and achievements of individuals with Duchenne, but recognises the whole disability community. It's a reminder that every person, regardless of ability, deserves the opportunity to thrive and be supported in every aspect of life. Together, let’s continue to push for progress, raise awareness, and ensure a brighter future for all people with a disability. #StrongerTogether [Image description: The words on the left say “International Day of Persons with Disabilities | Let’s keep advocating for access to evidence-based care and quality of life for people with Duchenne and their families.” The background image is a photo of a powerchair.] #InternationalDayOfPersonsWithDisability #IDoPwD #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether

There is just over two weeks until Duchenne Australia’s first NSW Christmas party! Join us to celebrate the festive season on Sunday 15th December from 12pm to 3pm at the Cabarita Conservatory, Cabarita Park. RSVP's close this Friday. To RSVP, please email kathy@duchenneaustralia.org [Image description: Blue baubles on a blue ribbon with the words “Christmas Party – RSVP’s closing this Friday” with a penguin wearing a Santa hat peeking out from around the graphic’s frame.] #ChristmasParty #Christmas #FestiveSpirit #FestiveSeason #DuchenneAustralia #RareDisease #DuchenneCommunity #DuchenneAwareness #Duchenne #Becker #StrongerTogether