Although each genetic disease is rare, collectively they attack almost 1 in 20 people at some time in their life. Despite this, rare genetic diseases don’t attract the attention of big companies who have the money to fund research to find treatments and cures.
Our Moon’s Mission is committed to finding a cure for SPG56 through dedicated, results-driven research. With your help, we will give children affected by SPG56 a better tomorrow.
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 we came to grips with the painful diagnosis of SPG56. Despite the heartbreaking and vague prognosis of this degenerative brain disease, we were compelled to find a better outcome for out daughter. We wanted a cure for this incurable disease: we wanted to give our daughter the life she deserved.
We spent many months researching different gene therapies, meeting with scientists and interviewing genetic institutes around the world. Hope grew stronger as we stepped eagerly into a world of genetic science: toward scientists directly involved with success stories for other genetic diseases.
Carefully, we built Tallulah’s very own research team. Now we have a coherent team engaged in different, but critical, aspects of the science needed to identify and develop 2 programs to find a cure for SPG56.
In June 2021 our family funded for research to begin. A gene therapy and drug discovery project to cure SPG56 took off in Australia and the USA. Our Moon’s Mission was taking shape but we needed to secure future research to make the mission possible.
In August 2021, we established a charitable foundation called Genetic Cures for Kids. This volunteer-led charity is now propelling our mission forward – to raise awareness and more funds to continue these dedicated research projects and find a cure for SPG56.
Tallulah Moon, unbeknownst to us, was born to lead ‘Our Moon’s Mission’. She is the catalyst for great change: a moon shot to find a treatment for this currently untreatable disease. She is hope personified.
