Our Moon's Mission: Cure SPG56 with Gene Therapy

Please watch our video above to learn why we are urgently raising money for a life-saving gene therapy to cure our baby, Tallulah Moon, of a degenerative brain disease called SPG56.

SPG56 has already robbed Tallulah of walking, talking and so much more. If we don’t find a cure SPG56 will relentlessly take away Tallulah’s ability to swallow, cause her to develop seizures, and lose her cognitive abilities. We’re in a race against time.

Gene therapy is advancing quickly and has shown great success for recessive genetic diseases like SPG56. Researchers agree SPG56 is a strong candidate for successful gene therapy and with your help, we can fund the gene therapy and end Tallulah’s suffering.

Your generous donation goes directly through our registered charity 'Genetic Cures for Kids Inc.' and immediately into urgent research for a genetic cure for SPG56. Let's give children like Tallulah the life they deserve.

SPG-what?

SPG56 is a degenerative motor-neuron disease. It attacks little children, usually between 1 and 2 years old, and progresses with varying speed and severity. Most sufferers lose the ability to sit, stand, walk or talk. This is what happened to our Tallulah Moon.

As degeneration progresses, this life-limiting condition will continue to rob Tallulah of what abilities she still has- her cognition, her lust to learn, her ability to feed herself.

We are in a race against time to help fund the science to cure SPG56. Our family has kickstarted the gene therapy project, and now we need your help to fund this expensive but life-changing therapy.

Supporting this science won’t only help Tallulah – research to find a treatment or cure will help others living with this insidious disease. It doesn’t stop with SPG56 either. With every scientific breakthrough for each of these genetic diseases, we learn more about methods and solutions that can be used to treat other genetic diseases as well.

Funding genetic research is the only avenue we have to stop her quality of life going backwards.

Is a cure possible?

Yes! Gene therapy has shown success for sufferers of Batten disease, Spinal Muscular Atrophy and other genetic diseases. With your help, Tallulah Moon could be the first person with SPG56 to benefit from gene therapy and we need your help to make it happen fast.

Genetic conditions are curable. Genetic science and human ingenuity absolutely have the ability to develop a cure for SPG56– the roadblock is financial. Even though one in 20 babies in Australia are born with a rare genetic disease, these diseases don’t attract the large government grants or pharmaceutical investment needed to progress the science.

Until then, it is up to us to push towards a cure. You can help this happen.

The clock is ticking rapidly for Tallulah Moon, and without early intervention, this disease will progress with irreparable damage. We won’t give up on our daughter and we hope you can support us.

Our Story and Our Moon’s Mission

When our beautiful Tallulah Moon was born into this world in 2019, 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. In 2020, it did.

By 2021 our year of terror had turned into acceptance and now we’ve come to grips with the devastating diagnosis of SPG56. Despite the heartbreaking and vague prognosis of this degenerative brain disease, we are compelled to find a better outcome for our daughter- the life she deserves.

We’ve spent many months researching different gene therapies and interviewing genetic institutes around the world. Hope grew stronger as we learnt more about the world of genetic science: about research success stories for other recessive genetic diseases.

Carefully, we have built Tallulah’s very own research team and in June 2021 our family funded for research to begin. A gene therapy and drug discovery project to cure SPG56 has taken off in Australia and the USA. Our Moon’s Mission has started but we needed to secure funds to make the mission possible and cure SPG56.

Where does your donation go?

Every dollar you donate will go explicitly to fund the first phase of the gene therapy project- to develop and test gene therapy in the lab. Only after rigorous and expensive testing will we be in a position to treat children with SPG56. Each important step gets us closer, safely, to that cure within reach.

Your generous donation goes through our charity- Genetic Cures for Kids Inc (GC4K) before our unpaid Board redirect it to the labs to progress the research. GC4K is non-profit health promotion charity and all members are hard-working volunteers.

And what is GC4K’s first mission? Our Moon’s Mission: to cure SPG56.

What’s happening now?

A Drug Repurposing project here in Australia has already begun. Our research team on this project includes 2017 Australian of the Year, Professor Emeritus Alan Mackay-Sim, and Professor Ernst Wolvetang who have extensive expertise in genomics stem cell research.

We have started a gene therapy proof of concept in the USA and now we desperately need to fast-track funding so we can progress the research for SPG56. We are working with experts at the Jackson Laboratory. They are helping to develop a gene therapy customised to treat SPG56 that has been used to treat other diseases but this multi-million-dollar cure needs your help!

By donating today, you are playing an historic role in progressing vital research for rare diseases.

What can you do?

Embrace Our Moon’s Mission with us. Donate now.

Or help by spreading the word!

• Share this GoFundMe page and ask your networks to support us.

• Join Our Moon's Mission fundraising army and start a stress-free, commitment-free Facebook fundraiser for #TallulahsArmy and #ourmoonsmission- it’s so easy and the money you raise will directly propel this mission ahead!

• Follow us on Facebook Instagram, Twitter and LinkedIn. Use the hashtags #OurMoonsMission #CureSPG56 #GeneticCuresForKids #TallulahsArmy #MoonShotSPG56 to share the story and keep our mission on target.

As with any progressive disease, early intervention is critical. Your gift to research today means everything to families like ours, now and into the future.

Thank you for your support.