Welcome from the CEO
Welcome to an exciting October edition of Talking Point.
Well, we made it through September sugar free and together raised $206,736 for our neuromuscular community - well done everyone! A HUGE thank you to all of the fundraisers, donors, ambassadors and supporters for your contribution. The impact you're having on our programs and services is invaluable and you are directly helping the lives of those living with neuromuscular conditions, so thank you.
We have a couple of really great events coming up that I hope you can all make it along to... the Neuromuscular Information and Research Day and our much-anticipated Annual Community Day. Read further down for details.
This month also brings two important awareness initiatives that we fully support and are close to my heart - those being Mental Health Month and National Carers Week. Please join us in raising awareness about mental health this month, and knowing it's okay to ask, 'are you okay?' There are more details on Carers Week further down the page.
And whilst we've sadly had to cancel a few in-person programs due to low registration numbers, (such as our Nth Mum's retreat) we still have a lot happening online in Peer Connect, which I'd encourage you to check out in the new 3-month calendar just released.
In the Community News section, there's an exciting new appointment to our Board (welcome Zannie!), a great story in the lead up to National Carers Week, changes at the NDIS, and interesting perspectives on how Omicron impacted the disability community from the Royal Commission.
I'll leave it there for you to read on. As always, I hope you are all safe and well.
Yours sincerely,
Charlotte Sangster, (she/her)
CEO, MDNSW
What's on in Peer Connect?
Peer Connect is a collection of events and groups designed to provide a space for our community to support, share and learn with each other… here’s what’s on:
The October - December 2022 Calendar out now!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
It's time to celebrate with your MD community
Join us on Saturday, 26 November from 11:00am - 3:00pm for a fun-filled family event with plenty of activities and a catered lunch to celebrate our vibrant MDNSW community! All members are welcome – it will be a terrific chance to meet and connect with other MD families face to face.
There’ll be face painting, balloon twisting, a magician, presents, games, crafts and a special guest with a white beard and big red suit!
Last chance to register for the NIRD
The MDNSW Neuromuscular Information & Research Day is fast approaching, held on Saturday, 22 October at 1pm. It will bring you the latest research and treatment updates from the neuromuscular medical community.
You'll hear from medical professionals and people with lived experience of neuromuscular conditions on a wide range of topical issues including respiratory, bone health, falls prevention, transition changes, mobility and more!
Online Myotonic Meetup
Our series of condition specific peer groups continues in November with our Myotonic Meetup taking place online on Thursday, 3 Nov from 11am - 12.30pm.
We invite all people living with Myotonic MD and their families to connect and provide support and share valuable information and stories with each other.
“The meeting was enlightening, informative and inspiring. It was so great for my son to be able to meet others with the same disability and I was so proud of him participating and sharing his issues. The Fact Sheet was a revelation and I have printed copies to give to our OT and GP.”
- June meeting participant.
Sugar Free September a SWEET success!
This year's Sugar Free September challenge has helped raise $206,736 for kids, adults and families living with and affected by neuromuscular conditions.
A huge thank you to all our participants, fundraisers, donors, partners, community ambassadors, ambassadors, internal staff and supporters… you're all legends for working so hard to support our community!
Free tickets to Taronga Zoo for MDNSW members
Are you stuck for things to do on the weekend? Why not take the kids to the zoo - for FREE!
We are lucky enough to have been gifted a bunch of tickets from the lovely folks at Taronga Zoo for our MDNSW community to use! So, get in quick and pick up your passes today.
The Peer Collective - Making our voices heard
My name is Megan, I am 18 years old and will be 19 in November. I was diagnosed in 2006 with Duchenne Muscular Dystrophy. My brother also had DMD but passed away the year before I was born.
I love concerts, stage shows, movies, drawing, the footy – the mighty RABBITOHS, and of course Supernova.
Megan with Batman at Supernova
Have a story you'd like to share? Go to The Peer Collective, we'd love to hear from you.
Register now for small group workshops
The Physical Disability Council of NSW (PDCN) are running FREE online and in-person workshops for people with disability, their partners or family members providing direct informal (unpaid) support. Workshops will run from September through to end of November.
The Workshops will focus on:
- NDIS Self-Management
- Speaking Up for Yourself (Self-Advocacy)
- Reframing Resilience
National Carers Week
National Carers Week is an opportunity to recognise, celebrate, and raise awareness among all Australians about the diversity of Australia's 2.65 million carers and their caring roles. It runs from 16 to 22 October 2022. To mark the occasion, we'd like to share this story from one of the carers from our MD community, Frances:
"My son Felix trained as a builder after College, but was diagnosed with MMD aged 30. Felix lived with his girlfriend in Sydney for many years. He was her support and househusband until his condition deteriorated. He came to live with me about 4 years ago when stairs became unmanageable, and I moved into a spacious modern house on one level."
Faster access to minor home modifications
It is now easier and quicker to get the minor home modifications you need.
You no longer need to give the NDIS quotes from your builder if your home modifications are non-structural and under $20,000.
How has Omicron impacted people with disability?
The Disability Royal Commission has published an Overview of responses to the Omicron wave of the COVID-19 pandemic.
Experiences, issues and solutions were shared with The Commission. Here are some responses:
governments did not consider the needs of people with disability when mandating restrictions, setting up vaccination hubs or updating information about the pandemic
people with disability had trouble accessing personal protective equipment and rapid antigen tests
disability services were disrupted or suspended, making it hard to access disability support workers, which meant some people had to rely on family members for support
Welcoming Zannie Abbott to our neuromuscular community!
Zannie has joined the MDNSW board and brings with her 25 years of experience in events, public relations and community building.
Her decades of experience, knowledge and skills enable her to provide marketing and fundraising support to MDNSW to empower, support and connect our members and their families. Read Zannie's full bio here.
Pictured: Zannie Abbott
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Thanks to our Official Partners
