Welcome from the CEO

Welcome to the November edition of Talking Point! 

It’s hard to believe that we are almost at the end of the year, and we still have so many exciting things coming up.

Firstly, I’d like to introduce and welcome two new Board Directors to the team. We are excited to welcome Harvey Blackney and Susanna Montrone to our Board. Harvey has had a 40-year career in the prosthetic profession, with varied roles across clinical research, leadership, commercial management and more. Susanna is a government, communications and public policy expert, having worked for various Ministers in the NSW Government for nearly a decade and has experience as a trusted adviser to government leaders, CEOs and Boards. We look forward to working with Harvey and Susanna and receiving their wealth of knowledge to shape how we deliver our services to our community.

In case you missed it, on Saturday 2nd December, we will be hosting our 63rd Annual General Meeting followed by our Community Day celebrations at the Granville Centre. We’d love for you to join us as we thank our incredible community for their support and engagement over the last year. Read on below to find out more.

If you follow us on socials, you would’ve seen that our team recently hosted a Women’s Retreat in sunny Bowral. It was so lovely to see new friendships formed within our community and watch the ladies have an absolute blast. We can’t wait to host another one very soon!

Lastly, we have also just launched our Christmas Appeal! Read on below to get to know one of our cutest members, 7-year-old-George, and why going to camp is important to him and his family.

Thank you once again for all your support.

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

MDNSW Staff Profile - Take 5 with Laura Howard

1. What is your role at MDNSW?
   I work within the Service Delivery team. I’m responsible for our Kids Camps, Duke of Edinburgh program, and Young Adult’s weekends, as well as supporting our Peer Connect program.
    
2. What is your work background?
   Before MDNSW, I had worked in a range of disability service settings, most recently SIL/SDA services, though I first started at an MDNSW camp back in the day! I am also super passionate about finding creative solutions to life’s challenges, something I attribute to my experiences and training within Girl Guiding.

3. What are some of your most memorable moments at MDNSW?
I have seen time and time again the benefits of the peer support approach when people with shared lived experiences can get together and support one another. It is incredibly powerful. I’m also a sucker for the magic of camp, when kids get to come to something that is just for them, where they don’t need to explain themselves and they can just be kids gets me every time.

4. If you had a soundtrack about your life, what song would it be?
Currently, I would say ‘It Is What It Is’ by Jenna Raine. It’s a fun track that is a great reminder not to take life too seriously and to have a laugh at yourself every now and then. Definitely worth a listen and a cheeky dance!

.

Women's Retreat

Last weekend, a group of 8 women living with NMCs and their support workers came together for the 2nd MDNSW Women's Retreat at the familiar yet newly branded Park Proxi Gibraltar Bowral. What a very special time, full of laughs, tears and life-changing experiences for the women who participated.

From a ‘Sparkle and Shine’ three-course welcome dinner with impromptu Karaoke, to buffet breakfasts, heated pools, games night and a pyjama party, new life-long friendships were formed!

The retreat created a special supportive space that participants were able to share the highs and lows of life, without judgement or explanation. The women lifted each other up and shared tips, life hacks and valuable ideas were exchanged.

“What I got out of the retreat was reassurance from being with women who really understand what I’m going through, which empowered me to stay positive and keep fighting. That encouragement really gave me much-needed confidence to dig deeper and see ways through the challenges.” Read the full recap here. We can’t wait to host more Women’s Retreats soon!

Info Share Online - Getting the Best from Your Support Workers

Recruiting and managing support workers is a topic that comes up regularly. Let’s chat about ways to build a great team and get the best from them, so you get the right support! Bring along your tips, your challenges, success stories, your job ads and interview questions

The session will be held on Wednesday, 22 Nov 2023 at 7.30pm – 9pm.

To register for this online session please RSVP to Carolyn
 

Community Day - 2 December - Granville

Join us in celebrating our fabulous MDNSW community and mark the end of the year at our annual Community Day.

There will be catered lunch, face painting, balloon twisting, trivia, craft station, games, Christmas presents for the kids, a visit from Santa and plenty more!

Registration is free! Contact Eliza at eliza.clark@mdnsw.org.au or on (02) 8986 9004.

To, RSVP or lodge an Appointment of Proxy form, please contact Charlotte at charlotte.sangster@mdnsw.org.au and specify if you would like to attend virtually or in-person. Alternatively, please call our office on 02 9888 5711. For more information, click here.

We look forward to seeing you there!

Join our 63rd Annual General Meeting

It’s almost that time again! Reflect on the year that was at our 63rd Annual General Meeting. We would like to invite all MDNSW members to join us for a chance to hear about our impact, provide input and let us say thank you for being part of our community.

You’ll receive a digital copy of our 2022-2023 MDNSW Impact Report and hear from the MDNSW team on their perspectives on how we have performed and represented our community throughout the year.

This meeting will be hosted both online and in person at 10.30am, Saturday 2 December at the Granville Centre, 1 Memorial Drive Granville NSW 2142. All attendees are invited to join us for Community Day at the same location to celebrate the year that was.

Renew your membership today!

We want to take a moment to remind you about the importance of renewing your membership with Muscular Dystrophy NSW for the year 2023-2024.

Why renew?

MDNSW is proud to be a membership-based not-for-profit organisation.  

Our members play a vital role in what we do, providing essential peer support and a strengthened united voice for people living with a neuromuscular condition. 
 

Membership is open to anyone with a connection to people with neuromuscular conditions, whether you are a person with a NMC, a carer, family member, healthcare professional or community group.  

Sydney Mum's Retreat 2024

It’s not too late to join us at our Sydney Mum’s Retreat! Designed exclusively for mums with a child with a neuromuscular condition, this 2-night retreat is a chance for mums to have some time off, relax, recharge and connect with other mums.

Enjoy a getaway of respite in the picturesque Blue Mountains with self-contained cottages, a barbeque area, tennis court, games room, fire pit and more.

Cost: $100 for 2 nights shared accommodation & some meals

Where: Federation Gardens & Possum Hideaway, Blackheath

When: 15 – 17 March 2024

Places are strictly limited! To register your interest please email jenny.smith@mdnsw.org.au or on 0431 690 629 by Friday, 16 February 2024

Can you support MDNSW this #GivingTuesday?

Join us in spreading the spirit of generosity this #GivingTuesday. Donate here and share your support on social media using the hashtag #GivingTuesday and inspire others to make a difference in our community.

This year, MDNSW's Christmas appeal tells George’s story, a brave 7-year-old boy living with Nemaline Myopathy, a rare form of Muscular Dystrophy and his holiday wish to attend our Summer Camp! We share George’s camp experience, to help raise funds that will ensure MDNSW can continue delivering Summer Camp for kids this Christmas, and for many years to come.

On Tuesday, 28 November the #GivingTuesday movement reimagines a world built upon shared humanity and generosity.

In the spirit of #GivingTuesday, MDNSW is embarking on a heartfelt mission to make this Christmas season truly magical for children living with neuromuscular conditions. 

We are rallying support for our annual Summer Camp; an unforgettable 5-day experience for kids aged 6-18, navigating neuromuscular conditions, who rely on power wheelchairs for mobility.

Accessible Aotearoa: Carolyn’s amazing 3-week road trip adventure!

Our resident Senior Community Support Specialist, Carolyn Campbell-McLean recently ventured to New Zealand on a dream road trip with her husband, Steve.

“Living in Sydney my whole life I have always wanted to cross the ditch and visit our neighbours in NZ. I think COVID convinced us all that life is short, and we should get out and about when its safe! So I spent 9 months planning our dream road trip around both islands and we are so glad we did!”

Advice for other travellers with MD - 

1. PRE-BOOK must-sees in advance but leave some free time to explore
2. BOOK accommodation in advance – at least 6 months
3. CONFIRM accommodation by phone call AND email for pics. Reconfirm
4. ASK for concessions and carer tickets – often free
5. MONEY Write up budget. Keep all receipts. Get receipts emailed
6. DOUBLE PACK if possible, take 2 of essential items eg hoist battery!

From visiting breweries and trying an outstanding selection of pale ales, to scenic ferry trips, getting up close and personal with the volcanic crater of Rotorua and enjoying the scenery at Huka Falls, Carolyn’s trip did not disappoint!

With some forward planning and the right support, anything is possible. Below are some top tips from our resident accessible travel guru on accessible travel.

Planning Tips - 

1. Get help with planning e.g. support coordinator, NZ Accessible Travel Forum, peers
2. Be clear with your care team about roles, roster, and contingencies – if your needs aren’t met, say so!
3. Use NDIS funding for disability-related costs

Want to know more about Carolyn’s trip? 
Check out the full story on the Peer Collective

Have your say: Fire-proofing our Community

Do you feel safe in the event of an emergency? Do you know what to do in a fire? Have your say and share your thoughts and experiences.

The Australian Federation of Disability Organisations (AFDO), in collaboration with the ‘Fire Proofing Vulnerable Communities’ (FPVC) project, want to hear from people living with a disability to discuss ideas around fire safety in the form of focus groups or an online survey.

Focus groups will be held across New South Wales to discuss such topics as the accessibility of information about preparing for disasters like fires and floods, what you need to prepare for a disaster or emergency, and the possible challenges that can arise.

This is an important opportunity to enhance fire safety within your local community. The aim is to gather valuable insights and identify how best firefighters can support in emergency situations.

For more information on the project, visit: here

To join a focus group visit: here

If you need assistance, please contact Laura on laura.howard@mdnsw.org.au.

Future Forward: MDNSW's Tech Transformation for Stronger Community Connections 

MDNSW is in the middle of an exciting technology transformation journey. We are able to improve our operations and information systems, due to funding received from the NSW Government, part of their Disability Advocacy Futures Program. This makeover isn't just about technology; it's about improving what MDNSW can do for our community.  
 
Our upgraded systems will help us engage with you, our community, more effectively; to make sure you receive an informed, personalised experience. Our new-and-improved Client Management System will make our services better, more accurate, and more efficient. 
 
 

It's not just about the now; we're thinking big! This project is all about building a stronger MDNSW family, improving how we connect with our community and partnerships across the sector. This funding support helps us to be better at what we do - empowering, connecting and supporting our MD community!

PDCN ILC Schedule

The Physical Disability Council of NSW are inviting members of our community to attend a number of free workshops being hosted in December, designed for people with a disability, their families, carers and support coordinators to learn and identify areas where the council can support.

These workshops include:

· “Post-Traumatic Growth Workshop” 10.00-11.30am, Monday 4 December

· “Speaking Up for Yourself Workshop” 6.00-8.15pm, Monday 11 December

· “Info Session: NDIS What can I purchase?” 10.30-11.30am, Thursday 14 December

All sessions are free to attend and will be hosted virtually over Zoom. To register, please contact admin@pdcnsw.org.au or contact 1800 688 831 for more. Click here for more information.