Welcome from the CEO

Welcome to the September edition of Talking Point! 

We've got some exciting things lined up for this month.

In Peer Connect for September we have the Info Share Online – Advocacy Forum and more interesting events scheduled for October.

Our new Peer Connect Calendar covering October to December is now available. 

We're currently in the midst of Sugar Free September, and we've already raised $110,000 towards our $280,000 goal! Thank you so much to everyone who is taking part and has supported our community through your generous donations.

We're also getting ready for Summer Camp and Community Day coming up in December, so be sure to check out the details for these events below.

In other news, two of our team had the opportunity to present at St. Patrick’s Primary School in Guildford as part of the schools “Diversity Staff Development Day”. They had the opportunity to share their specialist neuromuscular knowledge and lived experience with the staff. You can read all about it in the story below.

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

Maker's Day 2023

Maker’s Day – what a fabulous event this was! Old friends and some new, came together for the day to enjoy great company, share information, and chat over morning tea and a delicious lunch at Lidcombe. In between, there was craft to keep hands and minds busy. Some amazing lego flowers were constructed, as well as cards and bookmarks, and beautifully decorated glass jars. Scott brought along his home-made delightfully scented candles and Andrew gave an interesting photography presentation. Thank you to everyone who came along to create and connect.

Old and new friends hanging out on Maker's Day

Andrew giving his presentation on photography

CTE (Consumer Technical Expert) Program for NDIS participants 

Invespur’s CTE (Consumer Technical Expert) Program is the perfect opportunity to gain transferable skills needed for potential ongoing employment as a CTE in NDIS audit teams.

To give you the knowledge and confidence you need to succeed, you’ll take part in classroom training and field experience, while being supported by a community of fellow CTEs.
As a CTE you will use your lived experience to help elevate the voice of NDIS participants during audits of NDIS providers. 

Sugar Free September Registration is now open!

We are happy to announce that our main fundraiser, Sugar Free September, is here!

Sugar Free September is more than just a month-long challenge; it's a movement that brings individuals around Australia together to support people living and affected by neuromuscular conditions.

So far we have raised $110,000 of our $280,000 goal!!
​​​​​​​Let's make a difference, one sugar-free step at a time!

Summer Camp 16-20 December 2023

Summer camp registration has opened and we are getting excited already. Summer Camp is an incredible opportunity for kids who use a power wheelchair to meet and hang out with their peers, gain independence and confidence and have experiences made completely accessible to them. Finn (pictured left) had such a good time last year and didn’t stop talking about it all the way home. 

To register your interest please email jenny.smith@mdnsw.org.au and click below for more information. 

Community Day - 2 December - Granville

Pop this day in your diary as we will celebrate the end of another fabulous year with our NMC community. All adults and children living with an NMC and their families are invited to come together for trivia, craft, face painting, delicious food and drinks with a special visit from Santa!  
Registrations close 19 November!
This is a free event!

MD Community Education

Last month two of our staff were invited to present to the staff at St Patrick’s Primary School in Guildford as part of their Diversity Staff Development Day. One of the students at the school is a young boy living with Duchenne MD and his school are keen to learn the best ways to provide an accessible and inclusive environment for their student.

Our staff gave a presentation on neuromuscular conditions, and specifically DMD, gave some tips on inclusion in the school setting, shared stories from lived experience and facilitated a Q n A session with the staff. We were thrilled to meet such an engaged and passionate group of educators. Diversity is undoubtedly embraced in their school community, with a visit to the upcoming Powerchair Football World Cup already planned!

The school kindly sent through this great feedback after the presentation:

Hi Carolyn & Roisin,
I just wanted to say a big thank you again for presenting at our Staff Development Day. The staff had lovely things to say about your presentation and found it incredibly engaging and useful.
We really appreciate you both giving up your time and I hope we will have the opportunity to work together again in the future.

Kind regards,
Sam

International Myotonic Day!

The 15th of September was International Myotonic Awareness Day. 

Myotonic dystrophy (DM) is the most common form of adult muscular dystrophy and is considered the most variable of all known neuromuscular conditions.

Myotonic Dystrophy is commonly referred to as DM, an abbreviation of the Latin dystrophia myotonica. Did you know DM's other names include myotonic muscular dystrophy (MMD), Steinert’s Disease (for DM1), and Proximal myotonic myopathy (PROMM) for DM2?

Housing Hub and PIAC

Housing Hub have teamed up with the Public Interest Advocacy Centre (PIAC) to create resources for participants and supporters about challenging NDIS decisions.

Appealing decisions made by the NDIA can be a tough challenge. The Five factsheets make it an easier process.