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Golden Moon

@goldenia

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Loving life and forging a future for children with rare disease.
@ourmoonsmission - campaign to cure SPG56

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I cannot find all the words to describe the love I feel for this child. My soul. My dear sweet #FinnAtlas

But when I find those words, I'll write them into a poem and then read them to you, and you'll smile with those smiling eyes, touch me with that old soul, kiss my cheek with those rosebud lips and say something like "thank you mum, for making this so special"... And in your innocence you'll miss that it's actually you, Finn. It's you that makes this so, so special. It is you.

When I put your sister to bed last week, we were chatting about something trivial in a children's book and I threw out the line, "well, nobody's perfect," to which she thought a while in the dark, then replied with conviction:

"Except my big brother, he's perfect to me".

Couldn't agree more. Happy 10 years to you, Finn Atlas, how perfect it is to be in your orbit x by @goldenia

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10 days ago

YEWWWW!! This drone's-eye view of #Moonwalk2026 has us absolutely floating on Coolum's love.

Pure festival energy gifted by @maskeventsaustralia and @projectolympus2032 for @ourmoonsmission from up high. #TallulahsArmy climbing for a cure, moonwalkers skipping and rolling their way up the boardwalk, sand magic from @rakey_master, and our beloved @marshallhamburgermusic singing for the cure and summonsing the biggest, most magical full moon we've ever seen.

Massive thanks to @hc_containers_and_portables for capturing it all from the sky! What a night!

Roll on, #CoolumBeach. What an absolutely beautiful bunch you are.

#LetsCureSPG56 #OurMoonsMission by @goldenia

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2 months ago

This magical little human is my mate Tallulah Moon.

Tallulah has an incredibly rare, progressive genetic disease called SPG56 and her incredible family have spent years fighting to develop a treatment and gene therapy.

Now they need our help to give it to Tallulah and other kids with it.

Having lived my whole life with a rare neuromuscular condition, this is close to my heart. I’ve witnessed what advances in genetic research and treatment have done for my mates with SMA and CF by stopping the progression of their disease so they can live longer, fuller lives. I have SO much hope that Tallulah gets that same chance

This Friday afternoon, we’re Moonwalking for her.

Come and join us at Tickle Park, Coolum Beach from 3:30–6:30pm.

There’ll be loads of kids’ activities, food trucks and the talented Marshall Hamburger performing live.

Please come down, bring the kids and help us get a HUGE crowd behind Tallulah and her family.

TICKETS — https://events.humanitix.com/2026-moonwalk-for-our-moon-s-mission-with-marshall-hamburger-singing-for-the-cure

#SaveTallulahMoon #OurMoonsMission #GeneticCuresForKids #Moonwalk #SPG56 @ourmoonsmission @goldenia @visitcoolum @sunshinecoast @mayorrosannanatoli @marshallhamburgermusic taken in Coolum Beach, Queensland by @goldenia

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2 months ago

Women who inspire!!! 🤍🌕

There are some people in your life who redefine what you believe is possible.

My beautiful friend Golden is one of those people. 🤍

When her daughter Tallulah Moon was diagnosed with SPG56 — an ultra-rare, progressive neurodegenerative disease with no treatment — Golden went looking for possibility.

What began as a mother determined to find a cure for her little girl became Our Moon’s Mission.

Years of relentless advocacy, fundraising, research and belief have brought a gene therapy for SPG56 to life — and now they are working to get it into clinical trial.

I am endlessly inspired by this woman.

By her willingness to stare at something seemingly impossible and say, we’re going to try anyway.

To turn fear into action.
Love into purpose.
And one little girl’s story into hope for families around the world.

On Friday 28 August, we have the opportunity to stand beside Golden, Tallulah and this incredible mission at the 2026 Moonwalk for Our Moon’s Mission at Coolum Beach. 🌕✨

They have come so far.

Now let’s help them get this cure across the line.

Event + ticket link is in my bio. 🌙🤍

#OurMoonsMission #Moonwalk2026 #RallyForRare #SPG56 #sunshinecoast taken in Noosa, Queensland by @goldenia

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2 months ago

#OneYearOn #PaperAnniversary #BestDayEver #FullHearts #LoveAndLaughter 💚 👰 🤵 💍 ☘️ taken in Aghadoe Heights Hotel & Spa by @goldenia

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3 months ago

It's finally happened! I mean yes, I finally replaced my wedding day eyeliner, but only because of that... I met her! My namesake! My Tocaya!

I know every Sarah in my life is questioning my excitement right now, but I've gone 44 years traipsing around the globe, and never met another human called Golden! This is so amazing!

I actually heard of this rare gem through a gorgeous university friend who met her at a bush dance once in the rainforests of Diamond Valley. These reports that another REAL LIFE born-and-bred Golden existed in the world, not only on this planet but here in the Sunshine Coast hinterland had me curious! Was it her nickname? Did she choose her name? Or was she the OG. Named at birth like me, having lived through the same curious scrutiny and admiration for a gifted name, all her life?

And then, there she was. Emitting Gold through a black suit under the shiny lights of Myer's makeup station! If I hadn't looked so lost searching for "not so toxic" make up, Annette from Chanel probably never would have introduced me to Golden to pursue my pseudo-organic hunt! Kindred in spirit and name! Yes: we both use the Yuka app.

Friends, meet Golden Rose! A goddess of North American lineage as well, she was named after the golden roses in her grandmother's garden at her birth. And she is SO Golden. A soul searching, straightforward woman, with just enough 'naughty' in her eyes and a friendly smile to suggest how she goes on the dance floor on a night out with the ladies. Maybe that's how all Goldens roll off the line.

History has been made 😂 No longer are we just lonely human Goldens among a long list Golden Retriever and exotic dancer profiles on Facebook. This, my friends, is a unique human duo- Golden Moon and Golden Rose 🌕🌹

Come find us in Level 1, Section 4, every 11 years when I need new makeup.

Happy Friday! by @goldenia

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5 months ago

Ahhhh! We are so grateful for the team at @ottobock_australia and @nextlevelop2025 for bringing what Tallulah now calls her “super suit” into our orbit.

For 8 weeks, Tallulah is now trialling the Exopulse Mollii Suit as part of her day to day combat of SPG56.

While @ourmoonsmission remains focused on getting to clinical trial for the gene therapy we've developed to stop #SPG56 in its tracks, Tallulah is doing the work in real time. Our little legend won't stop taking on this progressive condition, and almost always with a determined smile.

Recently, Toots has felt increased spasticity and tone in her legs and shoulders, making crawling, walking and reaching more scissored and strenuous. Now her speech is changing too, as the muscles in her face contract- frustrating for this clever child after the incredible acquisition of speech she has spent years working so hard to build.

Honestly, we really have to see how the trial goes with the suit's gentle electrical stimulation. It helps support muscle relaxation, and the effects are seen more over the long term.

But this first trial showed some mega wins in the eyes of proud parents, therapist and girl!

And the suit itself? After wearing it, Tallulah summed it up best:

“It makes my body feel stretchy. I like it!”

Then we do too, Toots. We’re starting with one hour sessions every 48 hours. Early days, but her willingness to wear it and the way she’s responding already feels like a strong start.

This is what it looks like alongside the science. While we push toward a clinical trial, Tallulah continues to show up and do everything she can to live her best life

#exopulsemolliisuit #ottobockaustralia #ourmoonsmission #tryanything by @goldenia

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5 months ago

I loved that my 9 year old told me on a sunrise walk that it's David Attenborough's 100th birthday today!

This legend has spent a lifetime teaching generations of children, including mine, to slow down, look closely, and find wonder in the natural world.

Happy 100th birthday, David. 🌸

A flower (or two) for you, a picture, and a few of my favourite wild things.

Long live the king of conservation. by @goldenia

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5 months ago

I'm so shocked and devastated to hear of Trish Crossin's unexpected passing. Too young and far too sudden for a woman who truly deserved a long and happy retirement (while always working!) after her many years of service to her family, friends, the NT and Australia.

@trishcrossin was someone I had the pleasure of working for in Darwin and Canberra. She was a wise mentor during some very prickly politics in 2012, when I left radio production and joined her office as a greenhorn media adviser. She took me under her wing and gave me the space to grow and learn. And in that same understated, steady way, she helped shape the paths of many others too.

This photo is of the office team Trish led that year along with @lukegoslingmp who was stepping his way into politics, and the energy and smiles carry a remarkable familiarity to how I remember that time. Life in the electorate office and Parliament House was not without its turbulence, but she kept us grounded and always had room to make it fun.

I saw her as a politician for all the right reasons. Her achievements were many, and her remarkable ability to listen, retain knowledge, and then use it for good was a lesson in itself. She was first a mentor and forever a friend.

Trish, I will miss your generous spirit. The birthday messages each year, the Christmas cards in the post, and those thoughtful updates on all that your family had achieved that year. They were such a reflection of you. God knows they will keep achieving, as Crossins do, inspired and motivated by their wonderful wife and mother.

All my love to Mark Crossin and all your beautiful kids and grandkids.

Vale Trish. by @goldenia

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6 months ago

When I asked each person in the house what they liked best about Tallulah's birthday, the unanimous answer was "seeing Tallulah so happy the whole time". Ngawwww.

Seriously. That girl was ready to party!

Oh yeah and Tallulah's was "getting that cake" 😂

A castle for my warrior princess.

Happy 7th little lady. We are all so crazy for you, and rightly so. by @goldenia

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7 months ago

Taking a leaf out of my gorgeous girl @chachiconnell's book- she says it's still all Happy New year as long as it's January.

And let's face it- this year of the snake is only really shining it's final full moon tonight 🌕

Hang in there. Life is a holiday. As long as we say it is!

Thank you Coolum. I love you. by @goldenia

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9 months ago

Oh December!
From carols in Canberra, catch ups with cousins, the rain, sun and pure joy of grandparents sprinkled throughout festive chaos and sea salt... We couldn't be more grateful for the gathering season and the memories we get to make together.
Here's to 2026 with more realised dreams - and if you're anything like my kids - more pavlova and cans of cream 🤮😂 by @goldenia

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10 months ago