…Experience at sunset. Spectacular. Romantic. Magical. New York you’ve been an absolute blast….concrete jungle where dreams are made….we’ve wheeled 120kms around you and seen, smelt and felt so many incredible…
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The Big Apple of My Eye – NYC – Part 2
2018 PhD Scholarship Award Recipient: Samantha Bryen
…impact first-hand within our community! Find out more here. So Sam, how did you get into the world of neuromuscular research? When I finished high school, I didn’t really know…
Read MoreKeep the Only Camp for Kids with Muscular Dystrophy Alive!
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Discounts, Bills and Blackouts
…the rebate – its stays with you. This change starts on 1 August 2021 https://www.ewon.com.au/page/media-center/news/updates/a-win-for-life-support-customers Energy Made Easy website – to compare billing www.energymadeeasy.gov.au – compare all costs both the…
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Team 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 MoreInternational Women’s Day High Tea
…and remember to wear a touch of purple to represent International Women’s Day. The cost is just $25 and includes: Sweet & savoury high tea, including wine, beer, soft drinks,…
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There’s no ‘I’ in Team: Lessons in creating your own dream team
…diversify your team! Options include word of mouth, newspaper, Facebook, promoting through email to networks, job agencies, collaborating with other individuals, asking organisations to promote through their networks. The latest…
Read MoreItaly on Wheels – Fantastico!
…and inhospitable terrain yesterday, a short 30-minute push is easy. It’s just around the corner. Negotiate a few tricky pedestrian crossings, pass the 24 hr. military sentry (no selfies allowed)…
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FSHD 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,…
Read MoreAustralian Disability Strategy Consultation – 7 & 8 June 2023
…Wednesday 7 June 2023 1pm – 2.30pm https://www.eventbrite.com.au/e/review-of-australias-disability-strategy-guiding-principles-tickets-641236424407 7pm – 8.30pm https://www.eventbrite.com.au/e/review-of-australias-disability-strategy-guiding-principles-tickets-641265009907 Evaluation of Australia’s Disability Strategy Thursday 8 June 2023 1pm – 2.30pm https://www.eventbrite.com.au/e/review-of-australias-disability-strategy-evaluation-tickets-641260546557 7pm – 8.30pm https://www.eventbrite.com.au/e/review-of-australias-disability-strategy-evaluation-tickets-641265561557…
Read MoreHelp kids with Muscular Dystrophy by simply going Sugar Free!
…potential,” Ms Sangster concluded. All funds raised going towards MDNSW’s programs and services that include camps, retreats and online peer support programs. So, get involved and go #SugarFreeforMD. Visit www.sugarfreeseptember.org.au….
Read MoreJohn’s first time at Adventure Camp
…his experience! Q: Was it scary going to your first camp? JOHN: No, it was exciting. I was a little bit nervous about meeting new people. BRYONY (Mum): I was…
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…
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 MoreBatteries not included
…is quite a feat considering that I’m 6’2 and 110kg. It’s quick, and means that I don’t have to be rolled on the bed during dressing. My ceiling hoist was…
Read MoreOnline Grief Information Sessions
…sessions at a fair price, including discounted tickets to those in financial difficulty. To find out more or to book into a session, click on the links below. https://www.thesession.com.au/online-grief-program https://sydneygriefcounselling.com/…
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