Welcome from the CEO
Welcome to your jam-packed September edition of Talking Point. We have so much happening at the moment, it's an exciting time!
Check out our Peer Connect section for all the upcoming events and programs, including the Spring Roll, Siblings Day Out, Northern Mums' Retreat, a new Info Share, the Neuromuscular Information and Research Day - and more!
We have a lovely recap of our recently held MD Makers Day catch up, where 18 members of our neuromuscular community caught up to show off their hobbies and past times, and also try out some new activities of their own! It was so nice to see so many from our community together again, displaying their talents and creativity.
Coinciding with World Duchenne Awareness Day we added a touching article to our story sharing platform, The Peer Collective, on the life of Joeanne. Joeanne kindly shared her story, giving honest insight into life as a manifesting carrier as well as a mother to a son with Duchenne.
We're well into Sugar Free September and so far challengers have helped raise more than $137,000! Keep it up legends, you're doing an amazing job and helping so many people from our MDNSW community.
In the Latest News section, there's an exciting new partnership announcement we're so proud of, as well as amazing news for people living with SMA.
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!
Siblings Day Out is back
Our Siblings Day Out will be returning on Wednesday 5th October 2022. If you are the brother or sister of someone living with a neuromuscular condition and are between the ages of 6 and 16 – then this is the day out or you!
Get ready for a day swinging from the treetops at TREETOPS ADVENTURE PARK! Enjoy a climbing session amongst the treetops and a scrumptious lunch – not to mention make lots of new friends and have a blast.
Registration is now open for the Neuromuscular Information & Research Day
The MDNSW Neuromuscular Information & Research Day is back on Saturday, 22 October - bringing you the latest research and treatment updates from the neuromuscular medical community.
You'll hear from medical professionals and people with lived experience of neuromuscular conditions on a wide range of topical issues including respiratory, bone health, falls prevention, transition changes, mobility and more!
Relax at the Northern NSW Mums Retreat
This weekend retreat is a chance to get away, to share stories and connect with other mums who have a child with a neuromuscular condition.
Held from the 28-30 October and staying at Angourie Resort & Spa, Yamba, you'll be surrounded by a lush subtropical rainforest and unique natural wonders. Go on - you deserve it!
Gibraltar Hotel, Bowral
Women's Retreat in Bowral
This retreat is for women living with neuromuscular conditions and it is your chance to relax, rejuvenate and connect with other women who share similar journeys.
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.
Scott with his homemade candles and session facilitator Carolyn
MD Makers gonna make!
18 people from our neuromuscular community gathered for MDNSW’s first MD Makers Day at the Dooleys Silverwater Club. It was really special to listen to each maker’s story and learn the ‘what, why and how’ of their craft.
See who brought what and some of the lovely creations made by our community.
Recap of our 'Cost of Living...with disability' session
One of our largest online groups met last month to share valuable information on accessing schemes and support for funding the extra costs of living with disability.
Some of the topics included renting and buying a house, home modifications, NDIS Reasonable and Necessary, pharmaceutical costs, meal preparation and delivery, help with energy costs and hiring equipment.
People going #SugarFreeforMD double their impact
On September 7th, to coincide with World Duchenne Awareness Day, Sugar Free September held its 'Dollar Match Day' and participants helped raise $24,000 in total!
THANK YOU to everyone who donated, we couldn’t have done this without YOU! this has taken the running total up to $137,000 with just over two weeks to go in the challenge.
All money raised will go towards helping MDNSW run its programs and services and support people living with neuromuscular conditions to live the life they choose.
The Peer Collective - Making our voices heard
Joeanne Smith is a manifesting carrier of Duchenne Muscular Dystrophy. She has two children, Farah and Zak. At age 16, her son, Zak, died from Duchenne.
Joeanne kindly shared her story on The Peer Collective, giving honest insight into life as a manifesting carrier as well as a mother to a son with Duchenne.
Have a story you'd like to share? Go to The Peer Collective, we'd love to hear from you.
Lived experience panel members needed
The Physical Disability Council (PDCN) is looking for people from the disability community to join their Lived Experience Advisory Panel.
Panel members provide PDCN’s policy team with information and expertise on issues relating to the lived experience of people with physical disability, enhancing the effectiveness and impact of the organisation’s systemic advocacy work.
If you are over 16, live in NSW, have lived experience of physical disability, and a passion for social justice and equity, they are keen to hear from you!
Exciting new partnership announcement
For people living with a muscle wasting condition like muscular dystrophy, going to the gym or engaging a personal trainer can be an intimidating and for some an unrealistic notion.
We’re working to change that, by partnering with a fantastic organisation called WeFlex! They are all about increasing access for people living with a disability to the health and fitness industry by making it a safe and welcoming place for all.
We look forward to working with WeFlex to help achieve our vision that every person with a neuromuscular condition can live the life they choose!
Beware of NDIS scam email
The NDIA is aware of a scam email in circulation targeting providers (refer to below image). We have seen scams like this before.
The scammer is posing as the NDIS
and asking providers to confirm their details.
The email threatens to revoke the provider’s ‘license’ if details are not confirmed within 24 hours.
The email is not from an NDIS email address. It is a scam.
Ms Vernon says the approval of Spinraza on the Pharmaceutical Benefits Scheme brings hope. Source: ABC News
Spinal muscular atrophy community rejoices as 'life-changing' drug Spinraza approved for adults
"I have hope again," says Juanita Vernon as the 52-year-old tearfully discusses her feelings about being able to access incredibly costly medication that had drastically improved her quality of life.
-ENDS-
Thanks to our Official Partners
