Welcome from the CEO
Welcome to your August edition of Talking Point. We have a lot of new and exciting things coming up in our Peer Connect program that I hope you can join in on. There's something for everyone!
We have our new Kids Club, helping school aged kids with MD stay connected with their peers while playing games and having fun.
There's also our Spring Roll, which is sure to shake off any winter cobwebs and have you enjoying the spring air with others from our community.
Registration is also now open for Summer Camp, which will be held in December this year, so be sure to get in early and sign up soon.
And I have a couple of exciting Save the Dates to share with you: Our Sibling's Day Out is returning on Wednesday, 5th October and our popular Neuromuscular Information and Research Day is set for Saturday, 22nd October. Details to be released for both soon!
Lastly, I'm looking forward to going sugar-free this September for our annual fundraiser Sugar Free September and I hope you can join me for the challenge!
As always, I hope you are all safe and well. Enjoy the read!
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 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!
Get along to our new Kids Club catch up!
The Kids Club is for school aged kids with MD, to get together via an online facilitated session with their peers for fun activities and lots of prizes It's also a great chance to meet some new friends and catch up with old ones.
The next session will be held from 5pm - 6pm on Wednesday 24th August.
Join us for a fun day out at the MDNSW Spring Roll!
This is a free event for people living with a neuromuscular condition, their friends and family. The day will include:
- Accessible roll around the scenic parklands
- Treasure hunt
- Games & Crafts
- Fun food & delicious drinks
- and more!
When: Saturday, 24 September 11am - 3pm.
Where: Bicentennial Park, Egret Pavilion, Sydney Olympic Park
SMArties Connect during SMA Awareness Month
Earlier this month we hosted our quarterly SMArties peer group for adults living with SMA. It was great to welcome a new member to the group and have eight SMArties join in the conversations. We chatted about how people are going on the new treatments, managing Covid and staff shortages, sleeping positions, SDA Housing and even accessible indoor sky diving! Given its SMA Awareness month the group also reflected on what they would want people to know about SMA. If you are an adult living with SMA and would like to connect with other adults please contact Carolyn at carolyn.cm@mdsnw.org.au.
Registration for Sugar Free September is now open
Our favourite challenge is back for 2022! We're inviting you to support your neuromuscular community this September by going sugar free for kids and adults with MD.
Together we will take on the one month challenge and at the same time raise vital funds and awareness to help empower, connect and support people living with a neuromuscular condition.
Who's ready for Summer Camp?
Our popular Summer Camp program will be held from Wednesday, 14th - Sunday, 18th December 2022 and registration is now open!
Camp is all about kids stepping outside their comfort zone and learning to believe that they are strong individuals, capable of achieving remarkable things! Register here.
The Peer Collective - Surviving Covid when you live with SMA
47 year-old, Carolyn, lives with Spinal Muscular Atrophy and recently caught the dreaded Covid-19 virus. The good news is, with the support of carers, loved ones and large, chalky tablets, she fought through the symptoms and was feeling well within 5 days!
She documented her experience in her diary, which has been shared to our Peer Collective platform, so be sure to have a read and feel free to send us some of your own stories.
In Memoriam - A tribute to Bruce Ellison
Bruce Ellison passed away, aged 62, in May 2016. He was an outstanding, active, positive man, compassionate friend and all-round true gentleman.
Bruce was one of the strongest contributors to MDNSW in its history, serving 15 years as a Board Director and 3 years as President, stepping down in 2007. His great contribution was not only in a professional capacity, but in his genuine understanding of the needs of people living with neuromuscular conditions over different life stages.
News for people living with SMA
Did you know that August is Spinal Muscular Atrophy (SMA) Awareness Month?
And what better way to mark the occasion than with the exciting announcement that Spinraza is now on the PBS and available to everyone - regardless of age!
Covid-19 vaccination update for children
ATAGI recommends COVID-19 vaccination for children aged 6 months to under 5 years with severe immunocompromise, disability, and those who have complex and/or multiple
health conditions which increase the risk of severe COVID-19.
Changes on the MDNSW Board
Recently we said thank you and farewell to long serving MDNSW Board Directors, Dr Christina Liang, David Kay and Kim Brislane. All three had made an enormous impact over their combined 20 years on the Board. Taking their place on the Board is Professor Alastair Corbett and Mark McCoy.
Professor Alastair Corbett
Mark McCoy
-ENDS-
Thanks to our Official Partners
