Welcome from the CEO

Welcome to the October edition of Talking Point! 

In case you missed it, this Sunday is the Opening Ceremony of the 2023 FIPFA Powerchair Football World Cup and our team can’t wait to cheer on the Poweroos! We’re so excited to see our community members Chris Suffield and Ryan Seck who will be participating.

Our team is growing! I’m excited to introduce our new team members, including Alex Fernandez our Community Fundraising Specialist.

There’s lots happening in Peer Connect including Info Share Online: Keeping Our Minds Healthy and our online Halloween Party.

Our free Community Day event is also fast approaching so check the details down below to not miss out on a day of fun, food and festive celebrations.

We also have our results for Sugar Free September which you can check out down below.

Finally, it is with heavy hearts that we pay tribute to the late Richard Arnheim, former Treasurer on the MDNSW Board who passed away on September 16, 2023. Richard dedicated over a decade to MDNSW and he will forever remain in our hearts.

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

Honouring the Legacy of Richard Arnheim: Over a Decade of Dedication to Muscular Dystrophy NSW

It is with heavy hearts that we pay tribute to the late Richard Arnheim, former Treasurer on the MDNSW Board who passed away on September 16, 2023.

In the world of non-profit organisations, it's not often you find someone as dedicated and unwavering as Richard Arnheim. For over a decade, he served as the Treasurer on the Muscular Dystrophy NSW (MDNSW) Board. Today, we pay tribute to Richard Arnheim and his deep commitment to our mission.
Rick’s journey was exceptional. Living with muscular dystrophy himself, he understood the challenges that individuals and families face daily. His personal experiences made him uniquely qualified to advocate for those with muscular dystrophy.

A Governance Pillar
Rick’s contribution extended far beyond his personal journey. He provided invaluable financial guidance as our Treasurer, helping MDNSW navigate the complex world of finances, ensuring transparency and accountability in all our operations. His meticulous attention to detail and unwavering commitment to ethical standards have set a benchmark for us all.

Championing Fundraising Efforts
Fundraising is the lifeblood of any non-profit organization, and Rick understood this all too well. With unwavering dedication, he tirelessly worked to secure funding for MDNSW's critical programs and initiatives. His passion for our cause was evident in his ability to connect with donors, share his story, and inspire financial support. Thanks to his efforts, our organisation thrived, touching the lives of many individuals and families affected by muscular dystrophy.

A Pillar of Community Support
Rick’s passion extended beyond finance to our community. He was always a familiar face at MDNSW events, spreading positivity among our community members. His presence was a source of strength for those facing similar challenges and a testament to the power of community in the face of adversity.

As we remember Rick’s remarkable journey and legacy, we keep his family in our thoughts. He leaves behind his loving wife Julie and children who supported him in his journey. As we look to the future, we are grateful for the lessons learned from Rick and for the opportunity to carry on his legacy. We are confident that with the strength of our community, we can make a lasting difference in the lives of those affected by neuromuscular conditions.

Thank you, Rick, for your selfless dedication and determined spirit. You will forever remain in our hearts and continue to inspire us in our mission to empower, connect, and support people with neuromuscular conditions, and be an effective advocate for the neuromuscular community.

Our team is growing!

As we continue to evolve and grow as an organisation, we are excited to welcome a few new faces to the MDNSW team.

We want to welcome:
>Head of Fundraising, Nicole Forrest Green
>Partnerships & Philanthropy Coordinator, Prue Steel
>Community Fundraising Specialist, Alex Fernandez,
>Service Delivery Team Leader, Allyce Rui
>Marketing & Engagement Team Lead, Janina Amanaki
>Volunteer & Events Coordinator, Eliza Clark 

We are so excited to have them onboard and look forward to positively impacting the future of MDNSW and the neuromuscular community!

MDNSW Staff Profile - Take 5 with Alex Fernandez

1. What is your role at MDNSW?
   Community Fundraising Specialist. I’ll be responsible for developing and managing the community fundraising programs, campaigns and amazing events that MDNSW have on offer for the community.
    
2. What is your work background?
   I recently spent 6 years at the Heart Foundation, working as a senior program officer on the Jump Rope for Heart program, and program manager of the Coastrek program. Both of these roles sat in community fundraising. Prior to joining the Heart Foundation, I was a before and after school care manager and football coach. All of my roles have involved promoting active lifestyles and creating awareness and I have absolutely loved it.

3. Why have you joined the team at MDNSW and what do you love so far?
I have a close family connection to Neuromuscular Conditions, and I wanted to utilise my skills to continue to make a difference within the Neuromuscular community. Being a passionate fundraiser, nothing beats seeing the positive impact that community fundraising can have on the community. I love how passionate the MDNSW team are, and I cannot wait to support them with empowering, connecting, and supporting people with neuromuscular conditions.

4. What do you enjoy doing in your spare time?
I love the ocean, regardless of the weather my favorite thing to do in my spare time is swim at my local beach. I also have a very big family, so most of my weekends consist of visiting my nieces or spending time with my family.

5. Who is your favourite movie, book or
superhero character and why?
My favourite movie would have to be the Harry Potter series. I grew up reading the books and absolutely loved the movies.

Keeping Our Minds Healthy – for Mental Health Month

It’s Mental Health Month so let’s talk about staying well mentally and emotionally. We will share strategies, tips and ideas for coping with change and the challenges we experience when living with neuromuscular conditions. It's a safe, supportive space to give and receive support with those who understand.

The session will be held on Wednesday, 25 Oct 2023 at 7.30pm – 9pm
To register for this online session please RSVP to Carolyn by 23 Oct 2023 at carolyn.cm@mdnsw.org.au or on 0408472510.

Community Day - 2 December - Granville

Join us for our Community Day Celebrations!

It’s almost that time of year! To celebrate our vibrant MDNSW community and to mark the end of the year, please join us for our annual Community Day. Community Day is a free fun-filled event with plenty of activities for the whole family.

What’s on:
·Catered lunch
· Face painting
· Balloon twisting
· Trivia
· Craft station
· Boccia, Giant Jenga, and other games
· Christmas presents for the kids
· A visit from Santa
· And so much more!

Our member Mark Priestly and his family, all the way from Mudgee, celebrating at last year's Community Day

We will also celebrate and honour a familiar face and long-standing team member, Joan Martin who recently moved on to new adventures. Joan was an integral part of the MDNSW community and we look forward to thanking her for over 30 years of outstanding service to our community. Registration is free so don’t miss out! Contact Laura at laura.howard@mdnsw.org.au or on (02) 8985 9857 for further details. RSVPs close Sunday 19 November.

Places are strictly limited! To register your interest please email jenny.smith@mdnsw.org.au or on 0431 690 629 by Friday, 16 February 2024.

Sydney Mums' Retreat

It’s on again! Our Sydney Mums’ Retreat is back. Designed exclusively for mums with a child with a neuromuscular condition, this 2-night retreat is a chance for mums to have some time off, relax, recharge and connect with other mums.

With self-contained cottages, barbeque area, tennis court, games room, fire pit and more, come and enjoy a brief time of respite in the beautiful bushlands of Blackheath, in the Blue Mountains.

Cost: $100 for 2 nights shared accommodation & some meals

Where: Federation Gardens & Possum Hideaway, Blackheath

When: 15 – 17 March 2024

Powerchair Football World Cup

The countdown is on for the 2023 FIPFA Powerchair Football World Cup and we’re so excited! The international tournament will be played at the Quay Centre, Sydney Olympic Park from the 15 – 20 October, and streamed live.

Shout out to our members, Chris Suffield and Ryan Seck who will be representing Australia! Go the Poweroos!

To find out more about how you can attend or tune in to the YouTube livestream of FIPFA 2023 visit: https://www.fipfawc2023.org/

SMA Treatment updates

We are very excited to announce that PBS listings of Evrysdi (Risdiplam) and Zolgesma have been expanded to include adults, pre-symptomatic babies with 1 and 2 copies of the SMN2 gene (Evrysdi) and pre-symptomatic babies with 3 copies of the SMN2 gene (Zolgensma).

We are thrilled that our SMA community can now have access to a greater range of life-changing treatments available to them.

For further information about treatment for SMA, contact your clinical care team.

Advocacy in Action - Physical Disability Council NSW

As part of our role as a representative advocate, we are working with the Physical Disability Council to identify and share feedback around issues affecting people living with NMCs. 11 community members attended our recent Advocacy Forum to share their issues and experiences, and a couple of people contributed via email. Some useful sharing of information and problem-solving also occurred at the meeting.  
The issues identified include transport, support workers, access to health care and housing, accessible concert seating, access to retail/public spaces, and community attitudes.  Participants were very articulate and keen to share their experiences to help make systemic change.

Everyone discussing their ideas

We will report back about the progress of policy change in future issues of Talking Point. If you have any issues to raise please email Carolyn so she can pass the information through to our partner PDCN for their action in the policy arena.

Royal Commission Update

On 29 September, the final report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was released to the public.

The Royal Commission was established four and a half years ago in April 2019 as a result from many years of campaigning from advocates within the disability community. In the last few years and throughout the global pandemic, the Royal Commission held 32 public hearings and received just under 8000 submissions from people within the disability community including people with a disability and their families, friends and carers.

Thousands of people relieved their trauma and shared their stories in the hope it would bring about systemic change. As a result, the Royal Commission has made 222 recommendations to create a more inclusive Australia, where people with a disability can live free of violence, abuse, neglect and exploitation.

Some of these recommendations include:
· the introduction of an Australian Disability Rights Act – a huge win!
· a new disability government portfolio
· a minister and a department for disability equality and inclusion
· a review of housing options to further promote choice and control
· a review of the process of data collection and reporting
· a review of disability worker training and registration

If you need support, Blue Knot can provide free specialist counselling and referrals for people affected by the Royal Commission. Visit blueknot.org.au for more details. Alternatively, you can contact them on 1800 421 468, 9am-6pm AEDT Monday-Friday and 9am-5pm AEDT on weekends and public holidays.

Sugar Free September Results

MDNSW would love to thank everyone who participated in Sugar Free September. So far 462 amazing participants have raised an incredible $158,380, how sweet is that?! It’s not too late to share your fundraising page and collect any last minute donations, as fundraising closes on Tuesday 31 October 11:59PM.

Your generous donations will go a long way, by supporting MDNSW to not only empower and connect people living with neuromuscular conditions, but also fund support and care for individuals and families living with neuromuscular conditions. In December, we have our annual Summer Camp for kids taking place and we can’t wait to share how your generous donations has supported our camp.

Congratulations to our top fundraisers who went a month sugar-free for MD!

Top Individuals:
1.Robert Fraser - $28,586
2. Nathan Teong - $5417
3.Farah Touilii and Joeanne Smith - $4717
4.Adiel Potgieter - $3187
5. Kendall and Neve Smith - $2990

Top Teams:
1.Magellan Asset Management - $12,026
2 No Sugar, No Cry – Westpac! $6685
3. Team Johns Jellybeans - $6565
4.No sugar...No Sweat! - $4206
5.Team Jamie L - $2104