Welcome from the CEO
Welcome to your November edition of Talking Point.
As we approach the end of the year, MDNSW is gearing up for a lot of fun programs and events for you to join in on!
In addition to our online Peer Connect meet ups (with FSHD Friends and a great Info Share both coming up), we have some in-person celebrations planned that we are so excited about.
Our Community Day is happening next Saturday, 26th, and will also coincide with our AGM making for a day full of reflection, celebration and connection with our MD families and friends.
We also have our Peers End of Year Awards lunch happening at Dooley's in Silverwater on the 3rd of December. If you attended a Peer Connect catch up or program throughout the year, then why not come along to recognise each other’s important contributions to our neuromuscular community and see some familiar faces?
Our first ever Women's Retreat was held last weekend and we have a wonderful recap of the activities and experiences had by all who attended. It sounds like it was a weekend to remember that's for sure!
If you missed our NIRD medical seminar a few weeks ago - fear not! The recordings are now available, you can find them further down in our Community News section. There's also an AMAZING surprise donation we have to share with you in Community News, all thanks to a horse called 'I Wish I Win'.
I'll leave it there for you to read on. As always, I hope you are all safe and well.
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:
The October - December 2022 Calendar out now!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
It's Peers End of Year Party Time!
Join your fellow Peer Connect friends for lunch at Dooley’s in Silverwater on Saturday, 3 December from 12pm – 3pm to celebrate the end of the year and recognise each other’s important contributions to our neuromuscular community. Catch up with old friends & meet some new faces! We encourage all Peer Connect participants to nominate their Peer of the Year – prizes on offer for both nominators and the Peer of the Year!
This day also coincides with International Day of People with Disability, so even more reason to come along and celebrate.
Wonderful Women Connect at the Women's Retreat
Our first ever MDNSW Women’s Retreat (for women who live with a neuromuscular condition) was held at the picturesque Gibraltar Hotel Bowral over the weekend. What a very special time, full of laughs, tears and life-changing experiences for the 14 women who participated.
FSHD Friends Peer Connect December Session
We are holding a Peer Connect session online for people with FSHD and their families, and parents of children with FSHD.
We’d love you to join in, meet new people, share experiences and information, and connect with others who face similar challenges.
When: Tuesday 13th December 2022 from 7:30pm - 9pm.
Online Xmas Party fun
Join your MD friends on Thursday, 8 December from 11am – 1pm, for a fun end of year social meet up online. Let’s celebrate all that was good in 2022, and cheers to the year ahead!
There will be prizes for best festive dress and Zoom background. We’ll play some Chrissy Bingo and delve into an online escape room full of puzzles and clues to solve. Fun guaranteed!
Ask A Scientist
Our friends at the Kids Neuroscience Centre are ready and waiting to take your questions
Their cool 'Ask A Scientist' program gives you access to the leading experts and medical researchers of neuromuscular conditions - where you get answers to the more complex questions about your, or your loved ones, condition.
So, ask away! Send in your question and we'll be sure to pass it on to the KNC team.
MDNSW 62nd Annual General Meeting
It’s time to reflect on the year that was at our 62nd 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, 26th November, 10:30 – 11:30am. All attendees are invited to stay for our Community Day being held at the same location, with fun activities, engagement with other members and lunch at 12:30pm.
Train to become part of the Coogee Surf Life Saving team
We're back again partnering with our friends at the Coogee Surf Life Saving Club to offer young people living with a neuromuscular condition the opportunity to become official volunteer surf lifesaving patrol members!
Kicking off in the new year the online training and assessment will provide participants with the skills and knowledge to manage radio communications, understand important surveillance techniques and be an active Award member on Patrol, helping to keep beach-goers safe and potentially save lives.
Register now for small group workshops
The Physical Disability Council of NSW is hosting a brand new free Post-Traumatic Growth (PTG) Workshop via Zoom on Tuesday 22 November, from 10:00am - 12:15pm.
This workshop provides information to help understand what PTG is and the benefits it can bring to people's lives.
MDNSW member Natalie getting an accessible taxi
Frustration with Accessible Taxi Service
Recent peer groups have identified huge problems with the wheelchair accessible taxi service in Sydney. One participant reported that they waited over 2 hours for a taxi to return home from a medical appointment. Others have decided that they are missing social and health appointments due to the unreliability of taxis.
Peer Connect is a safe space to share challenges and solutions and MDNSW agrees that this is just not good enough!
As part of our Disability Advocacy Futures Program work, we are feeding this information through to the Disability Policy Interagency meeting, chaired by PDCN and we hope to see some changes and improvements in this space in the near future.
Recordings available for the 2022 NIRD
The Neuromuscular Information and Research Day (NIRD) was held on Saturday, 22 October 2022 via Zoom and featured a wide range of speakers from both the medical and lived experience perspectives. The event had 122 people register and, when surveyed, respondents said they'd give it 4.9 out of 5 stars and definitely attend again next year!
Winners are grinners!
MDNSW was the incredibly lucky and grateful recipient of a $520,000 donation, as a result of the Golden Eagle horse race, a charity race where 10% of the horses winning goes to the designated charity. Our horse, 'I Wish I Win' actually won it!
Board member Nathan Teong and Tait Jenkins recap the experience of being there:
“Well, what an amazing day! Joined by both our partners, we were lucky enough to experience a day to remember at Rosehill Gardens on Saturday 29th October. We don’t think we’ve ever screamed at a horse so much in our lives!"
-ENDS-
Thanks to our Official Partners
