Welcome from the CEO
Welcome to your July edition of Talking Point. I want to share with you the difficult decision we had to make last week, which was to cancel our Summer in Winter Camp scheduled for the 7-11th July. This was primarily due to the hazardous weather and flooding across Greater Sydney leading up to the week Camp was due to start.
After an assessment of the increased risk and consultation with the camp venue, we made this decision with the safety and wellbeing of our community and camp participants as our top priority. Whilst it pained us to have to do so, we know that this is the best decision given the dangerous and unpredictable conditions in the area.
Thank you so much to the parents, children and camp carers for your patience and understanding during this uncertain and very challenging time. We appreciate your support and trust and hope to reschedule Summer Camp back to December this year when it is usually held.
In good news, we've had a lot of activity and participation through out online Peer Connect program, with an Info Share on Independent Living and Support proving very popular. There's a lot scheduled in this space over the next couple of months too, so be sure to check out our calendar to see what's scheduled.
I'm also excited to announce the confirmed date for our annual Neuromuscular Information & Research Day as Saturday, 22 October 2022. Keep an eye out for program announcements soon!
I hope that you are all safe and well, especially those in flood effected areas. Our thoughts are with you all!
Yours sincerely,
Charlotte Sangster, (she/her)
CEO, MDNSW
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:
New July - September 2022 Calendar out now!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
Peers talk Independent Living & Support
Our June Info Share session was all about independent living and support. Ten peers joined knowledgeable guest speakers from Housing Hub and Hireup to hear all about different ways to achieve this dream goal.
We heard from members in our community about how they have gone about moving out of home, securing accessible housing, and finding supports that suit them. Thanks to Andrew, Jack and Scott who shared their successes and challenges with the group – how powerful is peer to peer sharing?!
Join us for Christmas in July
Join your MD community on Friday, 22 July from 12noon – 2pm for some festive fun, all from the warmth & comfort of your own home! 🎄
- Play a game of Festive Bingo
- Dress in your best ugly Christmas sweater
- Share your wishes & hopes for the rest of the year
- Choose your Christmas scene screen background
- Prizes galore
- Register early to receive a $20 lunch voucher to use on the day
Get creative at our Makers Showcase & Workshop
We are hosting a day of creativity & connection for our community at our first ever 'MD Makers' day!
Gather together to listen & learn from our peers, as well as share your passions, pastimes & creations.
When: Friday, 19 August, 11am - 3pm.
Where: Waterview Club, 214 Silverwater Rd, Silverwater.
Sign up early for Sugar Free September and get your own sugar free e-cookbook!
Do you know the benefits of going sugar free?👍🍎 Register your interest for Sugar Free September today and be the first to know when the rego opens later this month!
Pre-registering will also give you access to our 2021
e-cook book full of sugar free recipes. Yay!
2022/23 MDNSW Membership Renewals
The option to renew your MDNSW membership is available now! You have the opportunity to become a voting member for just $22 a year, and provide input towards the direction of the organisation at our Annual General Meeting.
Thank you for the valuable role you play in our neuromuscular community.
Save the Date - 2022 NIRD
The 2022 Neuromuscular Information & Research Day is on its way! Save Saturday, 22nd October in your calendar, so you don't miss out on this popular, free, online event for our neuromuscular community.
Program details and registration to be announced soon!
Bob and Sharon Lamb
A life with Robert Lamb
13/10/1948 – 21/12/ 2018
Bob and I met on 3 December 1966 at the Kingsgrove Methodist Church Friday night dance for teenagers. I was only sixteen and had commenced a cadetship in Survey Drafting. Bob, 18, eighteen was also a Draftsman, so immediately I realised that we had similar interests. We also shared a love for social dances and competition tennis, and metal detecting and fossicking, which we pursued over the years. Sparks began to fly, so on 9 January 1970, we married. Continue reading...
Updated eligibility for oral COVID-19 treatments
From 10 July 2022, more people with disability may be eligible to gain access to COVID-19 treaments, including:
- immunocompromised people over the age of 18
- people with a broader range of chronic respiratory issues
- adults living with disability who have multiple medical conditions.
Talk to your doctor about your COVID-19 treatment options. They can help determine the your exact eligibility.
Plastic Single-Use Straws Exemption has been granted
From 1 November 2022, the supply of plastic single-use straws will be banned in NSW.
The Plastic Single-Use Straw Exemption 2022 allows the continued supply of plastic single-use straws to individuals who require a plastic single-use straw due to a disability or other medical need, or individual or organisation acting on their behalf. This helps these people continue to live safe and dignified lives.
Your chance to have a say on accessing government services
Many people living with physical disability have frustrating experiences when accessing government services.
The NSW Department of Customer Service is doing some scoping to determine whether there is a way for people with disability to not have to keep giving the same information over and over.
The Physical Disability Council of NSW wants to know your thoughts on the value of such a project by answering their short survey. Data from this survey will be directly used to determine whether the NSW Government should invest in resolving these issues, so we strongly encourage you to participate!
Did you know that July is Disability Pride Month?
For those that haven’t heard about it before, Disability Pride Month is about recognising people with disabilities, celebrating their achievements and for them to have the opportunity to be proud of who they are. It draws similarities to LBGTIA+ Pride Month, however, this month has its own flag.
The black represents the mourning for those who've suffered and died from ableist violence, and also rebellion.
The zigzag band represents how disabled people must move around and past barriers, and their creativity in doing so.
The five colours represent the variety of people with disability, their needs and experiences (Mental Illness, Intellectual and Developmental Disability, Invisible and Undiagnosed Disabilities, Physical Disability, and Sensory Disabilities)
The parallel stripes represent the solidarity within the disability community.
So, this month (and every month) celebrate who you are and who you know in our neuromuscular community - you rock!
Thanks to our Official Partners
