…about $1,000 on rapid tests to provide to staff caring for a man with motor-neurone disease. “I’ve taken what I think is personal responsibility,” Campbell-McLean said. “I’ve stopped going out…
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Woman living with muscular dystrophy forced to spend $1,300 on rapid antigen tests for in-home carers
Finding my way, with CMT
…to go to the Western Sydney University (WSU) in Parramatta, as it was much closer to home. I studied Business and Commerce (Accounting) for 3.5 years and graduated in 2013….
Read MoreTeam Connor – How we parent our child with Myotonic Muscular Dystrophy
…right and to tell the truth, I knew that something was wrong as well…. So started the journey. Test after test, all coming back negative, lumbar punctures, MRIs, ultrasounds and…
Read MoreNeuromuscular Information & Research Day
…program here. Registration is FREE and open now, so don’t delay sign up here today! When: Saturday 17 October 2020 | 1:45 – 5:00pm Where: Online Zoom Conference (link…
Read More63rd MDNSW Annual General Meeting
…Centre, 1 Memorial Drive, Granville, NSW 2142 (wheelchair accessible) RSVP or lodge an Appointment of Proxy form and state whether you will be attending in-person or virtually to charlotte.sangster@mdnsw.org.au. Alternatively,…
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Escape from the Country
Hi, I’m Jack Wason, I’m 19, I have Duchenne Muscular Dystrophy and grew up on a farm in central NSW where I lived with my parents and my younger sister….
Read MoreInfo and Resources on Sexuality and Relationships
…article Liz supplied about one couples experience of para orgasm Family Planning NSW – https://www.fpnsw.org.au/who-we-help/disability – covers a wide range of projects, resources and workshops for people with intellectual disability…
Read MoreNSW Powerchair football season about to start
…13th February at 10:30am – 12:30pm. Where: Valentine Sports Park, 235- 257 Meurants Lane, Glenwood NSW Contact: Lija Ph: 0425310600 or Lta89302@bigpond.net.au Why not give it a go?! Season registration…
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Complaints and Advocacy Links
…NDIS. What Can I Do? 2/ NDIS Help – I don’t think I’m getting enough support. What can I do? You can also visit the NDIS page on the Disability…
Read MoreMovies & TV Featuring people with MD (and similar disabilities)
…Disability Visibility http://disabilityhorizons.com/2018/05/what-do-you-think-of-how-people-with-disabilities-are-portrayed-in-films-and-on-tv/ https://iris.peabody.vanderbilt.edu/resources/films/ Disabled Actors in Film / Hollywood There is a wealth of talented disabled actors, but all too frequently they are overlooked, even when it comes to…
Read MoreThe Big Apple of My Eye – NYC – Part 1
…special); and the main entrance foyer was epic!! Quick bite to eat and terrible coffee before heading home to get dolled up for the American Ballet!!! Note: Wheelchair access is…
Read More2018 PhD Scholarship Award Recipient: Samantha Bryen
…Disorders Interested to learn more about our current scholarship offerings? Visit our page or alternatively, contact our team on (02) 9888 5711 or e-mail us at info@mdnsw.org.au for more information….
Read MoreEntitlements and Concessions
…education.gov.au/service-special-child-care-benefit In-home childcare Covers part of the cost of a nanny in the home. education.gov.au/in-home-care Both Special Child Care Benefit and In-home childcare are useful for parents experiencing difficulties caring…
Read MoreWhy I don’t want you to feel sorry for my child
…featured on various platforms, including Scary Mommy, Thrive Global, Medium and SBS Radio. Her blog inspiringlifedreams.com is also the winner of the Infinity Best Parenting Blog of 2019 Award. www.inspiringlifedreams.com…
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Jamieson and Dan head to Tokyo
…Australia Head Coach, Peter King, says of seeing Jamieson play for the first time, “She demonstrated such skill, motivation, intelligence, and just got what boccia was all about right away….
Read MoreCOVID ‘Freedom Day’ is a terrifying prospect for some people. I am one of them.
…in-person interaction (how to act around other people again?). That first taste of freedom will be sweet. But right now, I’m worried about what “living with COVID-19” actually means. At…
Read MoreFSHD Global Research Foundation’s “FSHD Medical Education Portal”
The FSHD Global Research Foundation focuses on finding treatments and a cure for FSHD. In doing so, they fund world-class medical research, awareness, and education. In 2020, they brought research,…
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