Our Moon's Mission Help us cure SPG56

Funding research today and giving children affected by SPG56 a better tomorrow.

Watch our story How you can help

Our Story

Tallulah Moon suffers from SPG56 – a debilitating neurodegenerative disease, progressively robbing herof her ability to walk, talk, and move independently.

Read more  

Our Foundation

Genetic Cures for Kids (GC4K) accelerates the discovery and development of effective treatments and cures for children living with rarer forms of Hereditary Spastic Paraplegia. Its lead campaign is Our Moon’s Mission.

Read more  

Our Research

A dedicated, multi-faceted research team of internationally renowned genetic researchers already developing two critical programs to find a cure for SPG56.

Read more  

Medical Research Future Fund to save lives

In a world where hope often feels distant, groundbreaking research at the Australian Institute for Bioengineering and Nanotechnology (AIBN), led by Professor Ernst Wolvetang, is lighting the way forward.

This video highlights how vital support from the Medical Research Future Fund (MRFF) is fueling innovative gene therapies using cutting-edge brain organoid technology.

These initiatives are not just funding projects; they are driving real progress toward life-changing breakthroughs for children with rare diseases like Hereditary Spastic Paraplegia (HSP) Type 56. Continued MRFF support is essential to sustain this momentum and unlock new treatments that promise hope for countless families.

Join us as we explore how we can collectively make a difference in the fight against disease and pave the way for a brighter future.

Research progress report

Hope for all children living with SPG56

Our foundation’s first mission is ‘Our Moon’s Mission: to fund and find a cure for SPG56’. In this short film, you’ll see the work already achieved in six short months to prioritise our gene and drug therapy programs. With great coordination and focus, we are moving closer to a cure and connecting SPG56 families with hope.

Here you’ll meet a wonderful young International SPG56 patient who travelled to Australia to connect with Tallulah, Our Moon’s Mission and participate in the research being forged ahead by our world class genetic scientists.

Our Moon’s Mission

In 2019 our beautiful Tallulah Moon was born into this world. She arrived chubby, healthy and happy. We were blissfully unaware that one tiny glitch on one of her 30 thousand genes would one day give rise to an insidious disease called SPG56. In 2020, it did.

SPG56 relentlessly robbed Tallulah of her ability to walk, talk and crawl. The tragedy is that it will get worse with time.

It is Our Moon’s Mission to turn that tragedy into triumph. This mission will accelerate the discovery of a gene therapy for SPG56. It will find a drug to treat this relentless degenerative disease.

This is our mission but we are in a desperate race against time. With your support, we can get there.

Recent Posts

A marvellous night for a “Moonwalk”

Global Moonwalk unites 800 of ‘Tallulah’s Army’ under serendipitous full moon What an incredible journey we’ve been on together! On the Full Moon of 21 July, more than 800 amazing…

Rare Is Many

“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…

View all posts  

Subscribe to the mission

Discover the journey of hope and get the news as we reach our goals to cure SPG56 and save our Tallulah Moon.

Follow #ourmoonsmission

Our Supporters

Donate