Welcome to your December issue of Talking Point! 

It's time to deck the halls and put on your Santa hats - can you believe it's holiday time already? We've spent the past year making so many memories with our community, read on further for some highlights! I can't wait to see what 2025 has in store for us.

As we're winding down for the end of the year, we're also gearing up for a very busy start of next year! With our Summer Camp program running in January, as well as upcoming InfoShare sessions and International Women's Day events. I hope to see you at one (or all!) of these events!

2024 has been such as busy year -  a year full of growth, connection, and shared accomplishments, and none of it would have been possible without the support and dedication of each one of you. As a community, we've truly come together in ways that make me not only proud, but also excited for our future!

As we look ahead to the new year, I know the best is yet to come. Thank you for being part of this amazing journey.

Sincerely yours,

Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

As a way of wrapping up the year of 2024, we thought we'd ask some of our community members what their highlight of 2024 has been with us at MDNSW. Let's see what they had to say.

"This years women’s retreat was a blast. Canberra turned on beautiful weather for us all to wheel around Lake Burley Griffin , pop into the markets and take in the views Canberras stunning gardens. Thank you all for another fantastic retreat , friendships, shared experiences and memories." - Lisa

"Makers day is something I really look forward to out of my daily life and to connect with my peers. Each item I bring home is a memorabilia of the wonderful community connection had that day." - Julie

"We came down from Bathurst for the walk and I was amazed how welcoming everyone was. It was a great event and can't wait for next years."- Dave

"Making our video at camp was awesome!"  - Jaxon 

Interested in attending more events in 2025? Check out our latest Peer Connect calendar!

Community Day

Community Day on November 30th was an incredible success, and it was truly heart-warming to see so many families come together to celebrate the spirit of our community. The day was filled with fun, connection, and meaningful moments. We were thrilled to have PAWS Therapy join us, with their wonderful therapy animals bringing smiles and comfort to everyone. A special visit from Santa made the day even more magical, as children and families lined up to share their holiday wishes. We also had the opportunity to congratulate community member Scott Green on completing his gold Duke of Edinburgh award. The energy was vibrant, and it was a beautiful reminder of the strength and unity that makes our community so special. Thank you to everyone who joined us—your presence made it a day to remember!

Christmas Appeal

As we step into the festive season, we’re reminded that Christmas is a time of connection, joy, and belonging. For young people with neuromuscular conditions, however, finding those connections can be challenging. This year our Christmas appeal will gift young people empowerment, growth, and building a supportive network that helps them thrive.

Runaway HOKA Sydney Half Marathon

Registrations are now open for the Runaway Sydney Half Marathon 2025! Fundraise for MDNSW and round up your squad for a truly unique city running experience through the beating heart of the Sydney CBD on Sunday 4 May 2025. Your fundraising sidekick will help you with your registration, and all of your fundraising needs. You can reach out to Alex at fundraising@mdnsw.org.au or (02) 8986 9003. 

2023 - 2024 Impact Report 

Our 2023-2024 Impact Report is now available. Check out all the highlights of what we've achieved together as a community in the last financial year.

Office Closure

Our office will be closed from Monday 23 December 2024 – Sunday 7 January 2025.  For all enquiries, please drop us a note at info@mdnsw.org.au and our team will get back to you upon return.

If you need immediate assistance, here is a list of helpful hotlines:

• Beyond Blue - 1300 22 4636
• Lifeline - 13 11 14
• Disability Gateway - 1800 643 787
• Carer Gateway - 1800 422 737
• Emergency - 000

Summer Camp 2025 - Open Day

Summer Camp is coming up soon! In just over a month, we will be gathering for our Summer Camp, a week filled with activities, pranks, friends and just good fun. We are so excited and looking forward to welcoming some new campers as well as some of our camp veterans. This year we'd like to invite any families who are interested in camp but aren't quite ready to take the leap to come and check it all out.

When: Wednesday 15th January, 9:30 AM – 2:00 PM
Where: Summer Camp, Narrabeen

Are you considering summer camp for your child with a neuromuscular condition? Join us for an open day to meet the team, check out our activities and learn how we create a fun and inclusive environment for every camper.

We can't wait to meet you!

Big Red Roll & Stroll 2024

Thank you to our amazing MDNSW community for making the 2024 Big Red Roll & Stroll a huge success. We had a record number of registered participants who raised a record total of $76,400 for MDNSW. Despite the rainy weather, we still had an incredible turn out at Parramatta Park. We rolled, we strolled, and we danced in the rain (thanks to our DJ Joep for providing the beats!). We would love to make our 2025 Big Red Roll & Stroll event even bigger and better, be ready for an announcement soon! 

Peer Connect Calendar 2025

2025 comes alive with Peer Connect events and programs, all of which can be found in our new calendar below! Thank you so much to everyone who completed our Peer Connect survey last month. Your input has given us some great feedback on the program and the most popular topics and events. We’ve listened to your feedback so check out the new calendar and pop the dates in your diaries for 2025!  

International Women's Day - Save the Date!

MDNSW International Women’s Day luncheon will be held at The Conservatory in Cabarita Park at 11.30 – 2pm on Friday 7th March 2025.

Women in our community are invited to gather together for a day of celebration, comradery and connection, over a delicious grazing lunch in beautiful surroundings. Lucky door prizes and fun games. Tickets are $20 and places are limited - so get in quick! 

Young Adults Retreat - March 2025

That's right - it's time for another instalment of our Young Adults Retreat! Our Young Adults Retreats are for participants aged 18-30 living with a neuromuscular condition to get together, have fun and make memories with the freedom to plan your own program. Get in touch to secure your spot.

When:​ Friday 7^th March 2025 to Monday 10^th March 2025

Where: Point Wolstoncroft Sport and Recreation Centre

InfoShare - February 2025

Join us for on February 18 2025 at 11am for a special edition of InfoShare, with guest speakers from the National Muscle Disease Bio-Databank (NMDB), Emily Galea (Nurse Project Coordinator) and Dr Pete Howeling (Principal Investigator of the NMDB). They will be providing information on where the Bio-Databank started, the team, what the NMDB is, eligibility and recruitment information, the importance of patient advocacy groups, studies using the biobank, as well as progress and future direction. 

Adventure Camp 2025

Clear your calendars for April 2025 – Adventure Camp is locked in! Join us at The Tops Conference Centre, Stanwell Tops from Sunday 13 April – Thursday 17 April for the 2025 instalment of Adventure Camp.  

Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711. 

Remarkable - User Feedback

Remarkable is on a mission to empower Disability Tech innovators by providing the training, capital, and networks they need to create a future that is accessible, equitable and inclusive for all. 

Remarkable is inviting people with lived experience of disability to join their new User Feedback Community—a welcoming, inclusive space designed to connect individuals with disability, and their families and carers, to innovators seeking valuable feedback on their products and services. 

For any other questions, please contact Liza MacLean, Remarkable Head of Technology Implementation via email to: userfeedback@remarkable.org 

Hire Up Impact Grants

The Hireup Impact Grants program aims to support Hireup users with a disability and support workers in their pursuit of a good life. 

Each year, the Hireup Impact Grants are aligned to a theme. This year it’s Achieving in Life: Having a sense of purpose, and spending your time doing things that are meaningful to you. 

I Can't Stand Podcast 

Our Senior Community Support Specialist Carolyn and community member Jaxon recently sat down with the I Can’t Stand Podcast to chat. Tune in to here them chat about life stages of living with MD, their individual journeys the things that have encouraged them along the way.