Welcome from the CEO

Welcome to the last edition of Talking Point for 2022! 

As we reflect on the past year, I'd like to include an excerpt from the CEO & President's message in MDNSW's recently released Annual Impact Report, to summarise our achievements throughout a challenging year. 

"What an honour it has been to continue to serve the neuromuscular community this year.  

When faced with challenges, it is important to reflect on what you have been able to achieve. Our team recently took time to reflect on the values of the organisation: Empowerment, Responsiveness, Integrity, Collaboration, Respect and the many wins we’ve had over the past year, a few of which we would like to share with you:

Empowerment: This year we have continued to boost our engagement with members in regional NSW through our online Peer Connect groups. By continuing to utilise technology, Peer Connect has provided opportunities for connection across our community both online and in person. 

Responsiveness: The team have been working diligently over the last 12 months to develop our internal capacity by upgrading our contact database and transitioning to cloud-based systems These important updates allow us to remain responsive to changes in the sector and NDIS. It ensures that our systems are contemporary, support excellence in service delivery and aim to improve the experience of our members! 

Integrity: We’ve been working to increase engagement with members across NSW through our online communications. We are committed to keeping our community up to date on disability sector news, research updates and sharing stories of the achievements of people in our community. 

Collaboration: We saw the successful roll out of the Coogee Surf Life Saving program, where three young MDNSW members gained qualifications in radio operations. This initiative saw these three lads become the first patrolling club members who use power wheelchairs for mobility. This is a huge step forward for accessibility and inclusion in Australian beach culture and a partnership that we are extremely proud of!  

Respect: We consulted with our team, Board and members of our community to refresh our brand and update our tagline to “Your Neuromuscular Support Community” an important update which more accurately reflects who we are and what we do! 

We would also like to acknowledge our donors and funders who have contributed so much over the last year, we can’t thank you enough for your support and endorsement of our work. 

Looking forward, we’ll continue to look at ways we can best deliver safe and impactful services to our community, while managing the ongoing safety, workforce and economic challenges in the wake of the pandemic.  

Thank you to the MDNSW Board of Directors for your leadership, to our staff and team of volunteers who have remained flexible and committed during this period of intense change and challenges. We cannot do this without you, and we thank you for everything you do."   

I encourage you to download your own copy of the Report and reflect on the many great things we achieved together as a community. 

I wish you all a safe and happy holiday season, and I look forward to seeing you all in the new year! 

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

_{Members from Peer Connect enjoying the end of year catch up}

MDNSW Peer Connect Program Coordinator, Carolyn with Awards finalists Andrew Grant and Scott Green.

Celebration and smiles at our annual Community Day

On Saturday, 26th November, members of our neuromuscular community got together to celebrate the end of the year at our AGM and Community Day. We all had a fun time catching up with friends, enjoying a delicious lunch and getting involved in the many activities.

There was face painting, balloon twisting, lego, giant jenga, boccia and a craft stall! We even had a visit from Santa who gave out presents to all of the kids – you couldn’t get the smiles of their faces.

6-year-old Noah receiving a present from Santa

MDNSW members catching up for some online Christmas fun!

Peers Online Christmas Party

At our Peers Online Xmas Party participants from all across NSW got to celebrate the festive season and share their best gifts of 2022. With some fun dress ups and Zoom backgrounds it was Bingo and Christmas Trivia time.

Last Mums' catch up of the year

Our last Mums Wine n Chat online peer connect group for the year will be held on Thursday, 22nd December from 7:30pm-9pm. 

This group is a chance for Mums to come together to share stories and experiences with others who can relate with them.

Join us to reflect on the year that was and wish all our mums' the best in 2023!

Registration is now open for 2023 Adventure Camp

Our Adventure Camp gives kids aged 6-18 living with a neuromuscular condition who are independently mobile, the chance to experience teamwork and the thrill of a challenge over five fun-filled days bonding with their peers, and reaching a huge sense of empowerment, achievement and inclusion. Join us for a unique adventure of a lifetime!

When: Monday 10 April – Friday 14 April 2023
Where: Tops Convention Centre, 51 Bendena Garden, Stanwell Tops
Cost: $120

“Only 1 full day left? I don’t want to go home! Can’t wait to come back to camp!” – Finn, first time Adventure Camper.

Save the Date!

Our Big Red Roll + Stroll annual community fundraising event will be taking place in person on Sunday 19th March 2023!

Get together to celebrate your neuromuscular community at Parramatta Park, by completing the 3km loop and enjoying all the fun of the Event Village afterwards.

Virtual participation will also be available if you can't make it in person.

Train to become part of the Coogee Surf Life Saving team

We're back again partnering with our friends at the Coogee Surf Life Saving Club to offer young people living with a neuromuscular condition the opportunity to become official volunteer surf lifesaving patrol members! 

Kicking off in the new year the online training and assessment will provide participants with the skills and knowledge to manage radio communications, understand important surveillance techniques and be an active Award member on Patrol, helping to keep beach-goers safe and potentially save lives.

Join Pat, Scott and Jai at Coogee SLSC

CHECK THIS OUT! Be creative and inspire everyone around you like this fundraiser, Michael Rigney. He is doing a big walk in January 2023 in honour of his 10-year-old son who lives with MD to raise awareness and funds to support kids and adults living with MD.

Create your own fundraiser and give back to the community this Festive Season!

Check out these tips and do something for yourself while making a difference to the lives of people living with and affected by neuromuscular conditions.

• Swap Christmas gifts for donations
• Gather your mates and family for a BBQ or bake off and ask for donations in return
• Hold a Christmas cake sale
• Organise a walk or run with your friends and ask for an entry fee!

Tune in to podcast with a focus on your rights 

The NDIS Commission has partnered with disability advocate Dr George Taleporos to deliver new episodes of his 'Reasonable and Necessary' podcast.

In a recent episode, Dr George speaks with NDIS Quality and Safeguards Commissioner Tracy Mackey about participants’ rights, the complaints process, the role of the NDIS Commission, and our strategy to raise standards in the disability sector.

You can access all episodes on 'Reasonable and Necessary' YouTube channel.

CONTACT NDIS COMMISSION: You can call the NDIS Commission on 1800 035 544 or email at
contactcentre@ndiscommission.gov.au 

Do you have time to complete a survey?

The NDIA and Monash University Centre for Health Economics are developing a new way to measure the wellbeing of people with disability, including NDIS participants.

They want to hear from people living with disability to make sure they can measure wellbeing accurately for people with different types of disabilities, ages and from different community groups.