“All the feels” after Rare Disease Day success in 2024
We are thrilled to share the amazing success of Rare Disease Day 2024 and whilst there’s a sea of #TallulahsArmy troops out there who we still don’t know personally, we want to give our heartfelt thanks to each of you who took part and made this year glow. From friends and family to schools and community groups, your support has not only resulted in a whopping $4500 raised, It has also ignited a powerful surge of awareness and kindness. That energy has definitely left a lasting glow on Tallulah Moon, and will see our family on well as we step confidently ahead with our mission to cure SPG56.
In our third year participating in International Rare Disease Day, we’ve experienced something truly extraordinary — a community coming together not just to contribute funds but to spark global waves of awareness and compassion. Last year, during what lots of kids like to call ‘Rainbow Stripes Day’, we discovered that, along with raising funds, something even more vital was happening — awareness.
As we visited schools and Tallulah rolled out rainbows of smiles with her diamonte’d wheelchair and rainbow angel wings, people began to learn about her and the 300-500 million others like her facing rare diseases. This knowledge brought about a change in our community, one that goes beyond financial contributions and hits close to home.
Since we started this in 2022, many children and parents, recognising Tallulah as the vibrant soul from Rainbow Stripes Day, have approached us in various places over time — the park, the coffee shop, the beach — offering warm greetings and making Tallulah feel truly special. It warms our hearts to hear a surprise shout-out like “Hey, Tallulah, how are you?” or “Mum, that’s my friend Tallulah from Rainbow Stripes day!” from those who have seen her around.
And our amazing community, is not just local. It’s global. We want to give a special shout out to our Irish stalwarts- the students, parents and staff of Cappabue National School! This little Yellow Castle of learning in the green hills of Cork, Ireland has the biggest and brightest explosion of rainbow and love every year. We have “all the feels” for this community so far away, who continues to fly the flag of hope with us as we aim high and shoot for the moon!
Cappabue, Peregian Beach College, St Andrew’s College communities and #TallulahsArmy around the world- we salute you! You’ve each helped our growing girl Tallulah feel part of the crew, at a time when she’s showing us she really needs it most. Your kindness truly goes a long way for our little legend, and means the world for our other little mates living with SPG56 today.
Thank you for dressing up, baking, volunteering, donating, busking, singing and helping our daugther feel included. You’ve not only raised funds but have become advocates for inclusivity, helping children with a rare disease know their life is worth celebrating.
Cheers to a successful Rare Disease Day, we love you #TallulahsArmy!
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