Welcome from the CEO
Welcome to your May edition of Talking Point!
In this edition, enjoy a recap of our amazing Adventure Camp which was held last month. Along with our returning campers, we had three first-time campers join us! I was lucky enough to spend the whole five days at Camp and really experience how special it is for the kids that come along.
You can also read below more about one of these first-time experiences in Connor's Story, which we're sharing for our annual tax appeal.
Sadly, we had to make the difficult decision to cancel our Mums' Retreat which was planned for 2 June due to low registrations. We are hoping to hold another later in the year.
In good news, we have plenty coming up in Peer Conect, so be sure to keep across what's on by downloading our Event Calendar and reading the articles below.
This week also brings with it Australia’s largest annual celebration of volunteering, with National Volunteers Week.
Without our volunteers, our kid's camps wouldn't be possible, our donation box program wouldn’t exist, and our neuromuscular community wouldn't have access to the incredible experiences they do. It makes sense that the theme of this year’s campaign is "The Change Makers”. On behalf of MDNSW to all the Change Makers out there – THANK YOU for making a difference in the world! We are so grateful for everything you do. See our quick thank you video below.
Lastly, we have some really helpful updates in our community news section that you may not have been aware of, so be sure to scroll to the end and keep informed on the latest news from the sector.
As always, 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:
Check out the April - June 2023 Calendar!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
Info Share - Life After School
This month, on Wednesday 24th May, we’re looking for the younger members of our community to participate in our Info Share!
Are you a young person with MD and sometimes wonder what life after school might look like? Come and join the conversation and share stories with your peers.Ultimately, we hope this session helps you to get the support you need to make it work and build the life you dream.
Come along to our Myotonic Meet up - lunch is on us!
If you live with Myotonic MD or are a family member of a person with MMD, you’re invited to come along to our Peer Connect Myotonic Meet Up. It will be held over lunch (our shout) at the Ryde-Eastwood Leagues Club on Tuesday, 6th June from 11am – 2pm.
It will be a great chance to meet others with MMD, make friends and a chat in a friendly and supportive environment.
Accessible Aotearoa Info Share Recap
On 26 April we held our biggest Info Share online session yet, with 12 peers hearing all about accessible New Zealand! Jaxon gave a fabulous presentation on his recent cruise around NZ and Carolyn shared her 3-week road trip adventures. There were heaps of great travel tips shared in this session so if you would like to receive a copy of the information please contact Carolyn at carolyn.cm@mdnsw.org.au.
Presenting to the online group
Save the Date - Peers Winter Lunch
Connect, share and socialise with your peers and other families at our ‘choose your own lunch’ on Saturday, 24th June from 12noon - 3pm at Lloyds Bistro, Dooleys Club Lidcombe. All members are welcome so RSVP today to Carolyn at carolyn.cm@mdnsw.org.au.
Meet the little star of our donation appeal, Connor, who went to Camp for the first time and made a friend for life!
Six-year-old Connor, who lives with Congenital Myotonic Dystrophy, went to our Kid’s Adventure Camp for the first-time last month and met his first ever real best friend, George.
They shared a room together and had the time of their lives!
Brenton's Story - My journey to parenthood
"My decision to become a father wasn’t easy. In the past, I always said to myself and to Chrissie I didn’t want kids. No, more like I didn’t want to bring kids into this world as I was scared of the fact that they may have MD like I do, and I didn’t want him or her to go through what I did growing up.
Also, the fact of me having MD that I may not be around to watch them grow and them growing up without a father. My wife and I had a lot of things to consider."
Swimathon for our neuromuscular community
Our community has once again demonstrated its unwavering commitment to supporting those living with neuromuscular conditions.
On Monday, 15 May, Ryde AUSSI Masters Swimming Club hosted their annual Swimathon, a fun and inspiring event that raised much-needed funds for children and adults affected by these rare conditions. The Club's dedication to the cause is deeply personal, as one of their own members has been impacted by neuromuscular conditions.
The swim night was amazing, with an outpouring of generosity from participants and spectators alike. What a fun night we’ve had the pleasure to attend.
Campers John, Harlee, George and Isaac with Camp Carers
Adventure Camp Wrap Up
Adventure Camp 2023 was held at the Tops Conference Centre, Stanwell Tops in the first week of the April school holidays. We had 16 children attend, supported by 22 MDNSW volunteers and staff for the 5-day camp.
We were blessed with great weather, and took advantage of it, with a range of fun activities including drifter carts, building bottle rockets, creating amazing tie-dye and artwork designs and a trip to the Symbio Wildlife Park and beach!
Happy National Volunteer Week!
Australia’s largest annual celebration of volunteering is taking place this week from 15 to 21 May. This is the perfect time to honour the amazing volunteers in our community who give their time and energy to make a real difference. We want to express our gratitude for all the vital support they provide.
Covid-19 info for people with disability
NSW Health has helpful Covid-19 information on its website specifically for people with disability.
Find out more about vaccinations, testing, resources in different languages and more! Stay informed and check it out.
Sporting greats from our neuromuscular community
A huge congratulations to Jamieson Leeson & Daniel Michel! We are so proud of you both for your amazing achievements in Montreal this month at the Boccia World Cup!
Jamieson and Daniel won gold in the BC3 Pairs and Jamieson won an additional bronze in the BC3 Women's category.
Congratulations to you both!
-ENDS-
Thanks to our Official Partners
