Welcome to your November issue of Talking Point! 

I can't hardly believe it’s already November and that 2024 is nearly behind us. Time really does fly when you’re having fun and staying busy, which has certainly been true for our hardworking team here at MDNSW! 

Over the past month we’ve had our Young Adults retreat and our Women's retreat, as well as a whole host of online events – all of which you can read more about below. We’ve been working hard in the background organising all our upcoming events including our annual Community Day. Be sure to register for tickets here to join us on the day!  

As we get closer to the end of the year, I’d like to take a moment to reflect on everything we’ve achieved together as a community. It’s because of each one of our community members that we’ve been able to reach new milestones, and I’m incredibly proud of all that we’ve accomplished. As we look ahead, there’s no doubt that the best is yet to come. Thank you for your continued support and commitment—we’re just getting started! 

Sincerely yours,

Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

Carer's Lunch

During Carers Week MDNSW's Peer Connect program hosted a social lunch for Carers and peers at the Ryde-Eastwood Leagues Club. This was after feedback from the community that they would like more social lunches, where people can connect in a more informal, relaxed way. It was such a great turnout with 13 people attending. There was a diverse mix of people from all around Sydney, but all share lived experience of neuromuscular conditions. Everyone enjoyed catching up and chatting over lunch and drinks. After lunch we did a sharing activity where each person was given a flower and asked to introduce themselves and say what they CARE about, given it is CARERS WEEK. Then in turn they give the flower to another person and they do the same. It was a fun event! One participant reported it was her first time out of the home socialising since leaving school 3 years ago! 

InfoShare - Presented by Biogen

On October 22nd, we hosted an insightful Info Share session with Biogen, "A Medicine’s Journey to Reach the Person in Need." The event explored the critical role of individuals with lived experience and carers in the medicine development process, from clinical studies to regulatory approval. Speakers included Monique Alves, Biogen's Medical Director, and Lucas Tocchini, Head of Market Access, who shared their expertise on neurology, clinical research, and the Australian healthcare system. The session highlighted the challenges and successes of bringing new treatments to those in need. Thanks to all who joined us for this valuable experience!

Peer Connect Survey

Thank you to everyone who has been involved in our Peer Connect Events over the past 12 months. So that we can continually improve and tailor our program, we would like to seek your feedback. Your time and support is greatly appreciated. Complete the survey below or for more information email carolyn.cm@mdnsw.org.au

November Women's Retreat

This year we hosted our annual Womens Retreat in Canberra. The ladies enjoyed a Floriade themed Welcome Dinner on Friday night. On Saturday the ladies on wheels adventured 10k's around Lake Burley-Griffin, while the support team bonded over Devonshire tea. We crossed bridges, chatted to lovely human and furry friends then found some markets for lunch and a cool drink! Luckily everyone made it back to the Novotel before the batteries were flat! Our crafternoon saw everyone getting creative making Christmas tags and some ladies tested out the accessible tram. Dinner was a relaxed girls night in with takeaway at the hotel, before celebrating Lisa's 50th with brownies and blondies for dessert, and a very fun games night! The trip was such a hit that now the ladies are asking for a 3 night retreat! 
"Retreat for me is just somewhere I can go and be myself and let go, people understand what I am talking about, and I don’t have to pretend. And it’s great to meet everyone in the same boat, were all different but were all the same, and we understand, and it’s nice to be spontaneous and do activities together" - Tania 

Be a Community Hero!

Huge shoutout to Community Hero Brendan Suffield for his incredible efforts to complete the 42km Sydney Marathon! Not only did he push his limits, but he also raised $1146 for Muscular Dystrophy NSW. Brendan proves that you can all be heroes within your communities. Follow his lead and make a difference together! Who's ready to lace up and complete a challenge, or a fundraising event?  Reach out to Alex your fundraising sidekick at fundraising@mdnsw.org.au to get started.

Info Share - NDIA Changes

Join us online on Tuesday 19 November at 11:00am for a special edition of Info Share with NDIA special guests! This special edition of Info Share will feature not one, but TWO special guests joining us from the NDIS. Join us as we discuss the recent NDIA changes, as of 3 October 2024. The session is perfect for current and prospective NDIS participants, their families, and carers to discuss what supports can and cannot be purchased with NDIS funds. Register now to secure your spot!

Summer Camp - Save Your Spot!

Summer Camp is coming back with a bang for 2025. Get in quick – spots are filling up quickly! The camp will run Monday 13 January – Friday 17 January at Sydney Academy of Sport and Recreation in Narrabeen, NSW and will be jam packed with Summer Camp fun.    

Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.  

MDNSW 64th AGM

It’s almost that time again! Reflect on the year that was at our 64th Annual General Meeting. We would like to invite all MDNSW members to join us for a chance to provide input, hear about our impact, and let us say thank you for being part of our community.

When:​ Saturday, 30 November, 10.30am

Where: Granville Centre, 2a Memorial Drive, Granville

Community Day 

Don't forget! Saturday 30 November at 11am, we will be having our annual Community Day. Join us for face painting, a pizza lunch, and even a visit from Santa! And, there are some fantastic prizes up for grabs – you have to be in it to win it! 

For more information, or to register, contact our team at info@mdnsw.org.au 
or call (02) 9888 5711. 

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. 

PlayConnect+

Are you looking for a fun, supportive, and inclusive space for your little ones to play and grow? PlayConnect+ Playgroups are the perfect place for children aged 0-8 years with disability or developmental delay and their families to connect, learn, and thrive together. These playgroups offer a safe and welcoming environment where kids can explore and make new friends, and parents and caregivers get to share experiences and support each other. And best of all, they are FREE to attend! To sign up to a playgroup, contact admin@playgroupnsw.org.au or call 1800 171 882.

All Abilities Christmas Carols

Date: Friday 29th of November 2024 
Time: 5:00 PM - 7:00 PM 
Location: 756 Darling Street, Rozelle 
Join All Abilities for an evening filled with festive joy and inclusive celebration at Together2’s All Abilities Christmas Carols! 🎄 This event is completely FREE, and we invite locals, friends, and family to come together and enjoy the spirit of the season in a friendly and welcoming atmosphere. This year’s theme is “Shining Together”: celebrating the unique talents and contributions of each individual, highlighting that everyone has something special to offer. 

Dreamnight @ Taronga Zoo

Get ready for a magical night at Taronga Zoo! We’re thrilled to announce that families can now apply for a FREE family pass to the exclusive Dream Night on Thursday, December 5th!⁠ Imagine exploring the zoo after hours, surrounded by the sights and sounds of your favourite animals under the stars. This is a one-of-a-kind opportunity to create unforgettable memories with your loved ones!⁠ Don't miss out, we only have 50 free passes to give away — apply now for your chance to experience this enchanting evening!

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. 

Elevate The Stage

Join Elevate the Stage on 1st December 2024, from 4:30 pm to 6:00 pm at ICC Sydney Grand Ballroom to come together to celebrate inclusivity and the remarkable talents that make this event so special. This year’s line up is filled with talented performers, with even more accessibility features to ensure that everyone can fully enjoy the experience. Invite your loved ones and join in making this a celebration to remember.