Welcome from the CEO
Welcome to your July edition of Talking Point!
It is with mixed emotions that I announce the retirement of our Client Services Manager, Joan Martin, after nearly a decade of service to our community.
On the 20th of July, we farewelled a remarkable individual who has made a lasting impact on so many lives.
Throughout her time at MDNSW, Joan has shown unwavering passion and support for her team and the entire neuromuscular community.
Her contributions have gone beyond the call of duty, as she thoughtfully taught us, provided guidance, and advocated for the rights of our community members.
I wish to extend my deepest appreciation to Joan for her tireless efforts in supporting those affected by neuromuscular conditions.
Expanding Our Team for a Sustainable Future under NDIS!
We are thrilled to share some exciting news!
Muscular Dystrophy NSW is making significant strides towards a sustainable future under the National Disability Insurance Scheme (NDIS). To ensure we can continue offering vital support to our community for years to come, we are investing in growing our team, expanding our fundraising capacity, and making positive changes to our organisational structure.
To read more about the future expansion of MDNSW click here
We have lot's coming up in Peer Connect including, Neuromuscular & Information Day (NIRD) and MD Makers Day.
Also, Sugar Free September registrations are now open! We would love you, your friends and family to get involved.
Yours sincerely,
Charlotte Sangster, (she/her)
CEO, MDNSW
Our Community Farewells Joan Martin
"Thank you for being part of my life for the past 25 years, playing a pivotal role in making sure I had access to good education and the supports I needed to thrive. It's been wonderful to have a calm and encouraging voice to me and my parents. It's lead me to where I am now. All the very best with retirement!"
Julie Duong and family
"Dear Joan, I am so thankful for your guidance throughout my time at MDNSW. You always made me feel as though I had the best support I could ask for. You led the Client Services team so well with such patience, kindness and compassion. I am sad to hear that you are leaving your role but know you deserve a fantastic retirement."
Chris
MDNSW staff farewell Joan
"Joan, thank you for everything you have done to change the lives of so many for the better – the big moments, but perhaps more importantly, the many personal conversations over the years that make a huge difference.
Whether it’s been patiently witnessing our frustration or grief, navigating the gnarly practicalities, wisely guiding, gently encouraging - or just having a well-timed laugh, we’ve so appreciated you being part of, and there for, our community. You’ll be much missed.
Our very best wishes for your next adventure – hoping that you will enjoy lots of wonderful time with the family - and some more forest bathing in Japan."
Jamie, Bridget and Carsten
All members, friends and family are invited to say farewell to Joan at this years Community Day on December 2nd. More details coming in the next edition of Talking Point.
Peer Connect Lunch in June
What's on in Peer Connect?
Peer Connect is a collection of events and groups designed to provide a space for our community to support, share and learn with each other… here’s what’s on:
Check out the July - September 2023 Calendar!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
Women's Retreat
All women living with a neuromuscular condition are invited to attend our second Women’s Retreat to be held in Bowral, on the 10 – 12 November.
This retreat is your chance to relax, rejuvenate & connect with other women who share similar journeys. Make new friends, & enjoy time with wise women.
Express your interest to Carolyn by 31 August. Places are strictly limited.
Neuromuscular Information and Research Day (NIRD)
The MDNSW Neuromuscular Information & Research Day is back this August, bringing you the latest research and treatment updates from the neuromuscular community.
You'll hear from medical professionals and people with lived experience of neuromuscular conditions on a wide range of topical issues including updates on new and emerging treatments, safe swallowing, reproductive options, advocacy and more!
When: Saturday, 5th August 2023
Time: 12:00 - 4:30 pm (AEST)
Where: Online via Zoom
Cost: Free
Peers talk Home Automation
Last month our Info Share topic was Home Automation, a huge area of interest for people with neuromuscular conditions. We had a good turnout with 6 participants and some really useful discussion, sharing of ideas and problem-solving.
Conversation topics included:
- How home automation works for me
- Frustrations with trying to set up and get home automation to work
- Finding solutions for current issues
- Planning for future needs
- Where’s a good starting point?
- Using NDIS funds for home automation
- What happens when there are power outages?
We got onto important topic of Emergency Planning and what to do in emergencies. We highly recommend all our members check out the website https://imokay.org.au/ and make their own emergency preparations and plan.
If you would like a copy of the notes from the session, please contact Carolyn carolyn.cm@mdnsw.org.au
Everyone discussing their ideas
Make, Chat and Create
Join us for Makers Day Friday 25 August, 11-3pm at Dooleys, Lidcombe.
Join your peers for a relaxing, creative and social day.
You can build Lego kits, decorate mason jars, create papercraft projects and listen to an accessible photography workshop.
We will also have a buy, swap and sell stall.
Morning tea, lunch and drinks are all included!
This is a Free event, make sure you don't miss out!
Parenting with MD
Chat with parents with NMCs about their experiences managing parenting. Learn the tips and hacks to making parenting easier. Share your story and support and encourage your peers. Get emotional and practical support from those who share similar experiences and challenges.
Where: Online via Zoom here
When: Tue 25 July
Time: 7 - 9pm
Info Share Online Short-Term Accommodation
What is short-term accommodation? What is the difference between a holiday and STA? How do I pay for support worker costs on holidays? We have a guest speaker from Accessible Accommodation to answer your questions about STA, and share loads of ideas about the many accessible stays around Australia.
Where: Online via Zoom
When: Wed 23 August
Time: 7 - 9pm
Renew Your Membership to Muscular Dystrophy NSW for 2023-2024
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?
Membership is just $22 per year!
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.
By renewing your membership, you contribute to creating a strong, connected community and can actively participate in shaping the future of our organisation through voting privileges at our Annual General Meeting.
How to Renew
Renew your membership online here or contact our team on 9888 5711 to renew your membership over the phone!
Thank you to all of our Members for your ongoing support of Muscular Dystrophy NSW.
Sugar Free September Registration is now open!
We are happy to announce that our main fundraiser, Sugar Free September, is here!
We can't wait for you to be part of this extraordinary fundraising initiative.
Sugar Free September is more than just a month-long challenge; it's a movement that brings individuals around Australia together to support people living and affected by neuromuscular conditions.
By going sugar free for the entire month, you will help raise both awareness and funds, all of which will be dedicated to transforming the lives of children and adults with neuromuscular conditions, providing them with essential resources, better treatments, and much-needed support services.
Let's make a difference, one sugar-free step at a time!
Summer Camp -
Save the Date!
Our 2023 Summer Camp is coming up this December from the 16th-20th. It’s a camp for kids aged 6-18 living with a neuromuscular condition who use a power wheelchair for mobility.
Summer Camp will be 5 fun-filled days of connecting with peers, that offers a chance to experience teamwork and the thrill of a challenge, where campers can build on their independence and decision making skills.
There is more info to come, stay tuned!
Finn and Riley enjoy making Turkish mosaic lamps
2023 Tax Appeal raises an amazing $75,747 - Thank You!
Thank you for making a difference in this Tax Appeal! With immense gratitude, we extend our heartfelt thanks to all our amazing donors, supporters, partners and members who joined forces with us. Together, we have achieved something extraordinary, raising an amazing $75,747, and we couldn't have done this without YOU!
Your support means the world to us and to the children, adults, and families living and affected by neuromuscular conditions. Each and every donation has a profound impact on their lives, helping them navigate the challenges that come their way.
On behalf of everyone at Muscular Dystrophy NSW, Connor (in the photo), and his family, we want to say THANK YOU once again for standing with us.
Moving into SDA
Last month, Housing Hub featured Part 1 of Rebecca's diary entries where she shared her exciting journey from Perth to Melbourne, to live in a SDA apartment.
In Part 2, Rebecca takes us through things she prepared before moving in, how she found the right support worker team, and her experience settling into her new apartment!
Updated Self-managers Guide from the NDIS
The NDIS has updated the Self-Managers Guide.
This guide includes:
What self-management is, Deciding if self-management is right for you, Learning to self-manage and How to manage your supports
Self-management is when you, your plan nominee or child representative manage your NDIS funding. This means you have control over, and responsibility for, arranging and paying for the funded supports in your NDIS plan.
Physiotherapy and Duchenne Muscular Dystrophy
Cure Duchenne recently had a webinar on Physiotherapy for People with Duchenne, presented by US Physiotherapist, Doug Levine
This is a great overview on the role of Physiotherapy in Duchenne and a resource for newly diagnosed and existing families of all ages as well as providers.
Thanks to Duchenne Australia for sharing this valuable resource.
-ENDS-
Thanks to our Official Partners
