Muscular Dystrophy NSW | Businesses

Muscular Dystrophy NSW

Phone: +298 885711

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25.01.2022 "Reconciliation is a journey for all Australians as individuals, families, communities, organisations and importantly as a nation. At the heart of this journey are relationships between the broader Australian community and Aboriginal and Torres Strait Islander peoples. We all have a role to play when it comes to reconciliation, and in playing our part we collectively build relationships and communities that value Aboriginal and Torres Strait Islander peoples, histories, cul...tures, and futures." - Reconciliation Australia We acknowledge and pay respect to the past, present and future Traditional Custodians and Elders of this nation and the indigenous members of our MD community, as we come together to mark National Reconciliation Week. #MoreThanAWord #NRW2021

24.01.2022 We dropped past the launch of the Powerchair Football World Cup campaign yesterday, hosted by the Australian Powerchair Football Association Inc., to celebrate Australia hosting the event in October 2022! We look forward to this global event coming to our shores next year and showing the world what our Powerchair players are made of! Our very own Patron and Governor of New South Wales, Her Excellency The Hon. Margaret Beazley AC,QC was even there to show her support

23.01.2022 Our Peer Connect Program Coordinator, Carolyn, checked out the fantastic accessible housing set up out at Westmead yesterday! This is in preparation for our Peer Connect Info Share session on Accessible Housing this Thursday with the HousingHub. This SDA Apartment is by the Summer Foundation - it's called Highline. (Thanks to our tour guide Kelly!) Check it out in the video below and learn more about the great accessible housing options available to you at our session on Thursday. Visit https://mdnsw.org.au/event/adults-with-md/ for details.

23.01.2022 Adaptable clothing and footwear has come a long way, with innovative and clever designers incorporating modern yet functional clothing for people with a disability. Check out the great range from EveryHuman and be sure to enter this great competition from Source Kids to win a sick pair of new shoes

23.01.2022 Recently PBAC announced that Risdiplam was recommended for those under 18 but not for those over 18. This is great news for children with SMA and their families, but adults are still left with no access to medication in Australia unlike their peers in the US, UK and Europe. We are calling on the community for 2 important actions you can take now to help get adults with SMA treatment: Biogen has re submitted for Spinraza for the adult population for the July meeting,... and consumer comments are again needed by the community wanting access to treatment. Consumer comments are open till the 26th May at - www1.health.gov.au//pu/Content/PBAC_online_submission_form Even if you have submitted before or would prefer Risdiplam, please make your comments so they definitely know adults want treatment. Ask your friends, families and clinicians to submit also! PBAC has said that their decision is based on a lack of data about treatment for adults with SMA and has asked the Australian Neuromuscular Disease Registry for data. We need as many people as possible to get onto this registry, so please visit www.australiannmdregistry.org.au Together we can make a difference!

23.01.2022 Great to reconnect with old friends and meet new ones - face to face - at the Peers & Families Social today! Thanks to everyone who came along

21.01.2022 Its been a long time since we got together in person, so we're very excited to finally have a face to face Peer Connect event coming up this weekend! Join us this Saturday, 1 May from 12 -2.30pm, for the Peers and Families social lunch at Dooleys Club Lidcombe. To celebrate the return of face to face Peer Connect - LUNCH IS ON US! This will be a COVID safe event so please only come along if you are well. Catch up, chat, share stories and meet others in our community! RSVP to Carolyn by Thursday, 29 April [email protected].

19.01.2022 Join us as we celebrate National Volunteer Week, and thank our incredible volunteers for dedicating their time, skills, energy and enthusiasm to empowering and supporting the muscular dystrophy community We consider ourselves lucky to have people volunteer with us regularly from all parts of the community and in so many ways, including our brilliant camp carers, donation box collectors, helping hands in the office and event and fundraising helpers. Our volunteers are top...s! Our work wouldn’t be possible without our many wonderful volunteers, so please join us in celebrating their tremendous efforts #NVW2021 #waveforvolunteers #volunteers #volunteerappreciation #musculardystrophynsw #mdnsw @volunteeringaus @volunteeringaustralia

16.01.2022 Join our partner Hireup this Friday, 28 May, for an information session morning tea where you can get up to speed on what's new for them in 2021! This information session is for potential new clients, support workers, support coordinators, plan managers and anyone who is working in the disability sector. Enjoy a delicious morning tea while learning about the service Hireup offers for people living with disability and support workers. For full details and to register ...go to https://www.eventbrite.com.au/e/hireup-western-sydney-commu See you there!

14.01.2022 A new peer event for parents of children with Duchenne and their families is happening next Tuesday, 11th May from 7:30 9pm. Connect with others, ask questions, share tips and experiences! To get involved, contact our Peer Connect Program Coordinator, Carolyn, at [email protected]. We hope to see you there

09.01.2022 We're so excited for MDNSW members, Jamieson and Dan, who will be on their way to the Paralympics in Tokyo before we know it! Check them out in action in this article from the Australian Paralympic Team website!... SAVE THE DATE - Join us for our fun Boccia Social day coming up on the 3 July at Silverwater. Details coming soon

08.01.2022 Join us in supporting this fantastic new partnership, where your purchase also help The Loop - your neuromuscular resource hub - in providing educational information and connections for our MD community.