Happy new year and welcome to the first edition of Talking Point for 2024!

I hope you and your families had an enjoyable holiday season spent with your loved ones.

2024 is a big year for our community at MDNSW, and I cannot wait to share with you the new opportunities and exciting things we have instore for you this year.

Next month we will be hosting an International Women’s Day Luncheon (8 March) to celebrate the amazing women in our community, followed by our popular Mum’s Retreat (15-17 March).

I’m also excited to announce some dates for Young Adults Retreat (31 May – 3 June) and Adventure Camp (17 – 21 July)! Read on below for further details.

Lastly, I want to take the opportunity to thank everyone who supported and donated to our Christmas appeal. Together, we raised $11,000. This will go a long way in helping us create the best possible camp experience for kids living with neuromuscular conditions.

We are so grateful to you, our community, for all your continued support. Happy reading!

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

International Women's Day Luncheon Friday 8 March, 2024

Celebrate International Women’s Day with us! Themed #inspireinclusion, MDNSW will once again be hosting a special event to celebrate the strength, resilience and diversity of women in our neuromuscular community.

Women living with neuromuscular conditions, mums, sisters, family carers, friends & colleagues are invited to come together to celebrate International Women’s Day 2024 on Friday 8th March from 11.30am - 2pm at the new PHIVE  centre in Parramatta Square.

The Parramatta Council facility is a spacious, accessible event centre with a Changing Places bathroom onsite.

To register, email us at info@mdnsw.org.au or phone 9888 5711. We can’t wait to celebrate with you!

Thank you for your feedback!

During the holiday period, we spent some time to reflect, consult and evaluate the Peer Connect program with our community.

• We facilitated a total of 53 events in 2023, with 99 people with disability and 94 family members attending.
• There were over 300 attendances at Peer Connect events in 2023!
• Condition specific group and Info Share participants reported that...
  • 89% reported they learnt new information,
  • 72% reported they learnt new skills,
  • 71% reported they felt more confident to speak up about things that are important to them,
  • 87% reported that this activity helped them to build connections with other people or organisations,
  • 100% reported they felt heard and included in the activity.

“The session gave me new tools I can utilise to assist me living independently and manage support workers.” - InfoShare participant.

You told us...

• To continue to offer a mix of online and face-to-face meetings,
• To continue with condition-specific online sessions with guest speakers,
• To increase social outings,
• To have a mix of day/ evening sessions, weekdays and weekends,
• That popular topics of interest include NDIS, healthcare and travel,
• That transport is an issue for many, so we will review accessible public transport routes and will be seeking funding to assist participants with travel costs.

Thank you to all who offered their valuable insights. We can’t wait to make Peer Connect bigger and better!

Young Adults Retreat, Friday, 31 May - Monday, 3 June

Catch up with old friends & make new ones, create fun-filled memories & have the freedom to plan your own program at our Young Adults retreat!

WHEN: Friday 31 May – Monday 3 June
WHERE: Sydney Academy of Sport & Recreation, Narrabeen

For more info or to secure your spot, e-mail info@mdnsw.org.au or phone 9888 5711.

Adventure Camp: Wednesday, 17 July - Sunday, 21 July 2024

And just like that, we’re planning Adventure Camp! Adventure Camp gives kids aged 6-18 living with a neuromuscular condition and are independently mobile, the chance to experience teamwork and the thrill of a challenge over five days!

Make new friends, catch up with old ones, build your confidence and have fun.

WHEN: Wednesday 17 July - Sunday 21 July 2024
WHERE: Tops Convention Centre, 51 Bendena Garden, Stanwell Tops

Places are limited so register now. E-mail info@mdnsw.org.au or phone 9888 5711.

Marketing intern wanted!

If you’re studying a Marketing or Business degree at university and are looking to get hands-on experience, say hello! We’re on the lookout for our next marketing intern superstar. If you’re interested in an opportunity to network and work with a fun team, gain accreditation towards your study requirements and help us support the neuromuscular community, drop us a note at info@mdnsw.org.au.

Take 5 with Jenny: Celebrating 25 camps!

Summer Camp December 2023 marked my 25^th camp with MDNSW, and boy, what a ride it has been!

I had the best teacher, tough but brilliant, who set the model for success.

I have worked with fabulous staff, OTs, RNs and met many amazing carers, who grew immensely in their level of skill and confidence, giving so much of their time and expertise. I have also been delighted to have some of my family join me on the journey as volunteers.

I have seen young campers come for the first time, not knowing what to expect, but have such an awesome time with their peers and carers, that they cannot wait to attend the next camp.

I have seen nervous parents drop off their children for the first time, only to collect happy and excited children at the end of camp, amazed to see how they have grown in their confidence and level of independence.

Indeed, what a ride and such a privilege to be a small part of enriching lives and ensuring camp success!

A quote I live by: “Not all of us can do great things, but we can do small things with great love.” – Mother Teresa

Pictured: Jenny with her sister as Camp RN and grand-daughter as Junior Camp Carer in April 2017.

NDIS Review Update

The Government has recently announced a new Taskforce to consider options to:

• Ensure the new regulatory arrangements support the rights of people with disability so they can continue to exercise choice and control, including a direct employment model,
• Enable participants who are self-managing to continue to do so,
• Reduce the risk of harm to people with disability.

Dr George Taleporos from disability advocacy body, Every Australian Counts, has welcomed this announcement and the government's commitment to enable participants to continue to exercise choice and control and self-manage our supports.

Dr Taleporos said: "Thank you Bill Shorten for listening to the concerns of people with disability who self-manage, plan manage and directly employ. Our community has been very clear that choice and control over who provides our support must be maintained, including the option to choose both registered and unregistered providers. I look forward to working with the Taskforce on these important objectives. Natalie Wade is an excellent appointment as Chair of the taskforce”.

Fire Safety Focus Groups

The 'Fireproofing at Risk Communities' (FPRC) project is jointly funded by the Australian and NSW Governments, with the primary objective to enhance fire safety community information resources and address the disproportionately high risk of fire-related injuries and fatalities faced by people with disability.

Australian Federation of Disability Organisations (AFDO) is partnering with Fire and Rescue NSW on this project. They are looking for people with disability in several areas across NSW to participate in focus groups, both in-person and online. The aim is to gather valuable insights on their experiences receiving fire safety information and identifying how best firefighters can support them in emergency situations.

Natalie Wade, head of the new NDIS Provider and Worker Registration Taskforce, said on ABCTV yesterday:

"I acknowledge, and I am absolutely acutely aware that people with disability and their families are some of the most innovative people in this country. The human rights model of disability is built on the self-determination of a person and ensuring that they're able to self-direct where they wish and where they can.... I would like to reassure all Australians, those with disabilities using such set ups, that we will absolutely be engaging with you and there's no intention of disrupting the excellent working models that currently exist."

Both Dr George and Natalie are people living with neuromuscular conditions.

Participants will receive compensation for their time, and the sessions are expected to last no longer than 1.5 hours.

The AFDO are seeking peer groups, day programs and individuals in the following areas as a paid opportunity to chat about fire safety messaging:

• Tamworth
• Bathurst
• Dubbo
• Wagga Wagga
• Broken Hill
• Armidale
• Ballina

If you are interested to attend a focus group please complete the expression of interest form, or email Amber.Freeman@afdo.org.au.