Welcome to our July issue of Talking Point! 
 
The MDNSW team are recovering from a huge month after hosting our biggest fundraising event – the Big Red Roll & Stroll! With the collective efforts of our donors, our wider team, and our community of families (yourselves!), we raised over $76,000! From the very bottom of my heart, I want to say thank you! Whether it was attending on the day to join in the stroll to raise awareness or gathering your mates together to generate funding, your support means we can continue to deliver our Peer Connect program to you and your families. 

But it doesn’t stop there – we have a whole another calendar of events coming to you over the coming months! Later this week, we will be running our Adventure Camp at Stanwell Tops. We’ll also be hosting our Christmas in July Peer Connect gathering! Read on below to find out more.

In the background, the MDNSW team have been keeping busy with some much needed advocacy work. Earlier in the month, I travelled to Canberra to attend the National Summit on Neurological Conditions. I was lucky enough to not only listen to some great speakers but also have very productive conversations about how we can be bettering the advocacy space and working towards more advanced research into neurological conditions. 

MDNSW are committed to advocating for our community and we look forward to continuing to drive change within the disability sector. Watch this space!

Yours sincerely,

Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

Big Red Roll & Stroll - That's a Wrap!

In June, MDNSW hosted our BIGGEST EVER Big Red Roll & Stroll! Yes, that’s right – it was the biggest Big Red Roll & Stroll ever hosted!  

Despite the rain on the day, spirits were high! With music pumping and balloon animals roaming the park, the day was full of fun.  

With your support we raised over $76,000! The proceeds raised will support our Peer Connect program which gives our community the opportunity to bond over shared experiences and provides accessible (and fun!) programs and events.  

Shoutout to our highest fundraiser and board member, Nathan Teong who raised over $9,000, and our highest fundraising team, the Peer Connect Poster people who raised a whopping $11,869! 

But of course, we couldn't have done it without the support of the community - YOU! A massive thank you to each and every person who supported the Big Red Roll & Stroll by showing up on the day, donating, and sharing our message!

Don't forget to head over to our Facebook page to find the official Big Red Roll & Stroll photo album! 

Stay tuned for when expression of interests open for 2025! 

NAIDOC Week: Keep the Fire Burning - Blak, Loud and Proud!

National Aboriginal and Islanders Day Observance Committee (NAIDOC) Week occurs each year in July and aims to celebrate the culture, history, and achievements of Aboriginal and Torres Strait Islander peoples.  
 
The theme of this years' NAIDOC Week "Keep the Fire Burning - Blak, Loud and Proud!" is an invitation to all to stand in solidarity with our Indigenous community and help amplify the voices of those who have been previously silenced.  

To mark NAIDOC Week, our team joined Aunty Leanne on Dharug land to learn more about the Dharug people, their customs and their traditions. During the session, Aunty Leanne taught us how to weave and how to use ochre.

The talk, organised by Phive in Parramatta, was a culmination of interactivity and learning, creating a safe space for education and expression.   

We believe It's important to educate ourselves as much as possible to get a better understanding of not only our community, but also the wider community. Thank you to the City of Parramatta and Aunty Leanne for hosting this event. 

Christmas in July Lunch

Time to get into the Christmas (in July) spirit! Our Christmas in July lunch is on Saturday 20 of July at Blacktown Workers Club. Grab your Santa hats and pack your jolly spirit for a fun day with friends full of celebration. Spots are very limited so if you're interested in attending please contact us at info@mdnsw.org.au or call (02) 9888 5711. 

Neuromuscular Information and Research Day (NIRD)  

MDNSW is hosting the Neuromuscular Information and Research Day (NIRD) on Saturday 24th August online from 1:00pm to 4:30pm. There will be a range of presenters including doctors, research coordinators, physiotherapists, occupational therapists and behaviour practitioners. Please keep an eye out for our final agenda which we will upload to our website and distribute via email shortly! If you would like to register ahead of time, please email info@mdnsw.org.au.  

SMArties - Wednesday 7 August

Our latest SMArties online catch up will be on Wednesday 7 August at 7.30pm with special guest Dr Christina Liang.  It’s a great place to find out the latest info, share your tips and experience, learn from and support each other. Participants are smart, savvy and willing to share! Come and connect with your peers. To register and receive the Zoom link, lease email us at info@mdnsw.org.au.  

Coogee Surf Life Saving Traineeship

Do you have what it takes to be a surf lifesaver? Now you can find out!  

Our training program with Coogee Surf Lifesaving Club is a FREE program open to all MDNSW community members. The course runs for 3 weeks and aims to make surf lifesaving accessible for all.  

Spots are limited so register now! 

Have You Heard About Adventure Camp 2025?

Save the date! The dates for our 2025 adventure camp have been locked in! Adventure Camp will be at The Tops Conference Centre, from Sunday 13 – Thursday 17 April 2025. Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711. 

Summer Camp is Back - Register Your Interest!

Good news - Summer Camp is back! Our next Summer Camp will be held at Sydney Academy of Sport and Recreation in Narrabeen, NSW from Monday 13 January – Friday 17 January 2025. Get in quick and secure your spot today! Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.   

Young Adults Retreat - October

Our upcoming Young Adults Retreat dates have been locked in! Join us from Friday 11 October to Monday 14 October at The Lodge in Blacktown. Be sure to register to secure your spot. Contact our team at info@mdnsw.org.au.   

Focus on Ability Film Screenings

Thanks to NOVA Employment, Focus on Ability are hosting free screenings for their 2024 Focus on Ability Films. The screening will be held in Sydney on Monday 12 September.  Spots are limited so get in quick!

NDIS experience and support coordination practices – University of Tasmania research   

A PhD student with muscular dystrophy at the University of Tasmania is conducting research on how NDIS-funded support coordination services affect the rights and freedom of people with muscular dystrophy to have control over their lives and be included in the community.  

The study aims to discover ways to improve support services for people with muscular dystrophy by learning about their experiences and interactions with support coordination services.  

NDIS participants aged18 years old and older with muscular dystrophy who have used or are currently using support coordination services are invited to participate in the research.

If you have any questions about the study, please contact Sue by email at sue.kilpatrick@utas.edu.au or by phone at 03 6324-3632. 

Sydney Warrior’s Wheelchair Fencing Open Day  

Sunday 11 August 2024 Sydney Warriors Wheelchair Fencing are hosting an open day! A Paralympic sport since the 1960’s, wheelchair Fencing is fun, fast, dynamic & social sport. Sydney Warriors have programs suitable for all age groups. For more information or to RSVP email alex@australianfencingacademy.com.    

Save Our Sons Duchenne Foundation National Duchenne Conference

The Save Our Sons Duchenne Foundation National Duchenne Conference is being held at Waterview Bicentennial Park on Monday 16 September and Tuesday 17 September. The conference will have an international line up of speakers, set to ignite your curiosity, engage your mind, and empower you. ⁠Be sure to visit our MDNSW booth on event day and say hello.