Talking Point Header

Welcome from the CEO

Welcome to your March edition of Talking Point. We have so much happening at the moment in both programs and events, with our community finally able to start meeting face to face again!

We held a lovely picnic in Parramatta Park for International Women's Day and also saw the Big Red Roll + Stroll get friends and families together for a beautiful day of celebration and fun!

Seeing these bright and beautiful photos of our community together and celebrating is so wonderful. Thank you so much to all the fundraisers and donors who supported this important event that shines a spotlight on neuromuscular conditions ❤️

There is also plenty coming up in Peer Connect and our Camp/Retreat programs, so be sure to check out the articles in this edition for further details.

As always, take care and enjoy the read.

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:

Power Hour
Tuesday, 29 March 2022
Taronga Zoo
Girl Power
Wednesday, 30 March 2022
Mums Wine n Chat
Mums Wine n Chat
Friday, 1 April 2022
FSHD Friends
Tuesday, 12 April 2022
Thursday, 14 April 2022
Tuesday, 19 April 2022

New April to June 2022 Calendar out now!

Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!

Check out the Apr- Jun Peer Connect Calendar
 

Accessible Phone Photography Meet Up

Join a small group of friends for a relaxing afternoon at the Royal Botanic Gardens on Friday, 1 April from 11:45am - 2:45pm.

You will be able to share your experience with photography. Our guest facilitator will share tips for accessible phone photography, and the group will be given a couple of photo assignments as you wander the beautiful gardens. Lunch included. BYO phone or camera!

 
Sydney Botanic Gardens
RSVP by March 28 here
 

Recap of last month's Peer Connect Info Share session: Making the most of your NDIS

Nine people attended our online peer group chat last month about how to make the most of your NDIS. Peers enjoyed the opportunity to connect for the first time since Christmas, and it was great to see everyone contributing their experiences, ideas and building the community of peer wisdom and fellowship.

We heard from MDNSW Support Coordinators about how they can assist people with their plans and dealing with the NDIS. There were some excellent tips and tricks shared about what NDIS funding can be spent on and how you can speed up funding for Assistive Technology items.

 
Picnic in Parramatta Park

Celebrating International Women's Day together

The clouds cleared and the sun shone for our International Women’s Day picnic in Parramatta Park earlier this month, where 16 women of all ages and cultures gathered together from near and far to re-connect for our first face to face event since June 2021.

Our friend Sue gave a lovely Welcome to Country and we heard some beautiful stories of family, resilience and hope in the sharing circle. The high tea picnic hampers and goodie bags were a hit and everyone left feeling energized and connected. We hope this event will become an annual fixture on our Peer Connect calendar!  

Here's some really lovely feedback our Program Coordinator, Carolyn Campbell McLean received from people attending the picnic:

"I’d like to thank you and the wonderful MDNSW for organising such a well put on event on celebrating and recognising the women in our community. It’s always so wonderful to be with women who get it. It makes me feel so accepted and safe, a community to really be myself. As a “younger” person it also gives me women to look up to, genuinely."

"As women who also intersect with disability, CALD identity and motherhood we are living the #Breakthebias IWD theme in so much of our daily lives, our work and our advocacy that the MD lunch provided an essential counterpoint to that. It was a soft spot to relax and let our guards down. It was an opportunity to catch up with friends who ‘get it’. The purple theme, the individual grazing boxes, white rose and gift bag made us all feel appreciated and pampered. Creating that space is so valuable particularly with the challenges we face but especially after the extended isolation of the pandemic for our vulnerable community. I think we all left feeling uplifted and recharged. It was such an enjoyable afternoon the time slipped by so fast!"

 

Family Fun Day at Taronga Zoo   

Join other MD members and families on Tuesday, 12 April from 10am - 4pm for a fun day with the animals in this beautiful harbour location. We’ll meet at the Taronga gates at 10am to explore all the Zoo has to offer at your own pace and then catch up again at 12 noon for a bit of lunch. 

Just $10 per person or $25 per family will cover your Zoo entry and lunch pack, you just need to arrange your own transport to and from Taronga. And remember to charge your batteries as Taronga is hilly! 

This is a COVID safe event so up-to-date vaccination, social distancing, and check-in is required. Please book by Friday, 1 April. If you have any queries, contact Laura at laura.howard@mdnsw.org.au or on 02 8985 9857. 

Click here to book in now!

Sign up now for Adventure Camp 2022

Registration for the MDNSW Adventure Camp is now open!

Held over five days from the 21-25 April 2022, Adventure Camp gives kids aged 6-18 living with a neuromuscular condition who are independently mobile, a unique adventure of a lifetime!

Kids get the chance to experience teamwork and the thrill of a challenge while bonding with their peers, and reaching a huge sense of empowerment, achievement and inclusion.

 
Adventure Camp
Download the Camp flyer and contact our Client Service team to register here
 
Mums' Retreat
Further details and register

Sydney Mums' Retreat moved to June

Due to recent flooding at the venue, we have had to reschedule the Mums' Retreat to 3-5 June 2022. Registration for this fabulous weekend getaway is open, so get it in your diaries mums and treat yourself!

The Mums’ Retreat is a chance to get away and connect with other mums who have a child with a neuromuscular condition.

 

Summer Camp in Winter is on its way! How COOL is that?

Sadly we had to postpone our greatly anticipated Summer Camp, however, we are now planning Summer Camp in Winter! How cool is that? The new dates for Camp are 7 - 10 July 2022! One of our keen campers is 11 year old Bailey.

 "I enjoyed the camp zoom catch up because it was fun and good to see everyone. I really liked the magician as he was interactive and was funny.  The animal encounter was interesting and entertaining. I liked coming up with ideas for the next camp, and can't wait to attend in July."  - Bailey 

Camp is about kids stepping outside their comfort zone and learning to believe that they are strong individuals, capable of achieving remarkable things!

There are a variety of activities to choose from that suit all ages, personalities and abilities. Campers will be grouped according to their age and gender and will be looked after by experienced carers.

Bailey pictured at Camp in 2018

 
Summer in Winter Camp Flyer

Click the flyer to view more details and register.

Big Red Roll + Stroll

Neuromuscular community celebrated at the Big Red Roll + Stroll!

Over the weekend, we held the annual Big Red Roll + Stroll which saw 52 participants register and help raise more than $47,700 for our neuromuscular community! 

We just want to give a BIG THANK YOU to everyone who supported the event and made it possible, including our:

  • Top individual and team fundraisers
    • Natalie Macaulay - raising $3,731
    • SMArties and friends team - raising $18,986
    • Community Ambassadors
      • Roisin O'Hagan and her son Patrick
      • Carolyn Campbell-McLean
      • James Dunstan
      • Scott Green
  • Partners: Hireup, Kids Neuroscience Centre, Housing Hub, Physical Disability Council of NSW and Winston Hills Lions Club
  • Major dollar match donor and all of the generous donors
  • MDNSW staff, especially Joyce our fundraising guru for organising the event!

Registrations and donations will remain open until 08 May 2022 for anyone who couldn't complete their BRRS challenge over the weekend, but still wants to contribute. Click here to register. 

Watch our thank you celebration video!
Top Individuals
Top Teams
 
CSLSC Training
CSLSC Training

MDNSW Members join the Coogee Surf Life Saving Team!

Last year we partnered with Coogee Surf Life Saving Club (Coogee SLSC) for a NSW first online training program, offering young people living with a neuromuscular condition the opportunity to become official volunteer Coogee SLSC Patrolling members, and hold a Surf Life Saving Award.

Patrick, Scott and Jai all joined the free program and completed three training sessions where they learned about radio operations (two online and one in person). The third and final session was held earlier this month where all three were assessed and successfully completed the course. They are now official members of Coogee SLSC!

“I would just like to say that I'm very proud to represent the community as a surf lifesaver as well as someone who has a disability and I think it is important for people to know that and how having a disability doesn't stop us from doing such things.“ - Patrick.

Read more about the program and hear from the participants
 

Faster and easier access to assistive technology

The NDIA has improved the way it funds assistive technology (AT).

They no longer need quotes for AT items under $15,000, making it easier and faster for participants to get the AT supports they need.

beach matting
Read about these changes in the updated Assistive technology guideline.
 
Come and Try Footy Flyer

Come & Play Physical Disability Rugby League

The NSW Physical Disability Rugby League is seeking new players to join their inclusive game for the 2022 competition!

This is a great opportunity for ALL people who love rugby league to play in a fun and safe environment.

Come along to the Harmony Week try out day, this Sunday 27th March, 2022 at New Era Stadium, Cabramatta Rugby League Club. Click the flyer for details.

Thanks to our Official Partners

Hireup
ANMDR
 
 
  Forward 
Muscular Dystrophy NSW
80 Betty Cuthbert Drive, Lidcombe, 2141
1800 635 109
info@mdnsw.org.au
www.mdnsw.org.au 
You are receiving this email because you have subscribed to MDNSW communications.
Preferences  |  Unsubscribe