Although each genetic disease is rare, collectively they affect 1 in 20 people. There are 60 Million children who will die before the age of 5 from a rare disease. That’s the population of Italy. Other kids with rare diseases live longer, but these life-limiting conditions are often debilitating, serious and progressive. Like SPG56. No young person should have to suffer from a rare disease, and tr
eatments can be developed. 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. Genetic Cures for Kids (GC4K) is a registered not-for-profit charity. Its first campaign, 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, and build a framework to find treatments for other rare diseases. To find out more about our charity, visit https://ourmoonsmission.org/our-foundation/
To donate to our research please visit https://ourmoonsmission.org/donate/
THE JOURNEY TO OUR MOON'S MISSION
A story from tragedy to triumph, from the Whitrod family
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 heart-breaking 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. In August 2021, we established a charitable foundation Genetic Cures for Kids. This volunteer-led charity is now propelling our mission forward – to raise awareness and vital 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, and pave the way for treatments for more rare diseases in the future. She is hope personified.
