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Teddy was just three months old when he was diagnosed with CTNNB1 syndrome, a genetic disease similar to cerebral palsy. But there’s a lot about the disease that is still unknown. His parents don’t know if he will ever walk or talk, but research could provide a cure, which is why your donation today is so important.

Together we can beat children's genetic diseases.

Help us find treatments and cures for the 1 in 20 kids who need our help. Select your donation amount:

Help grow cells in the lab to study genetic disorders like CTNNB1 syndrome
Allows us to sequence DNA from patients like Teddy to better understand the syndrome
Supports work on ‘vectors’ the tools used to deliver gene therapy cures to a patient’s cells

Accelerate the search for cures.

By donating monthly, you can have an even bigger impact on children living with a genetic disease by funding more research.

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He could be non-verbal or in a wheelchair for his whole life. We just don’t know."

Teddy’s mum, Lucy

Teddy has neurodevelopmental delays, spastic diplegia, and visual defects. He’s challenged physically, mentally, and emotionally. It’s hard to predict what his future will look like.

Teddy may not be able to speak now, but that doesn’t stop him. He’s found a unique way to interact with the world – through music.

“The first year he would cry through therapies, but singing and music calms him down and has even become a way for people to connect to Teddy,’’ Lucy said. “It breaks the ice with someone new. I tell people to sing, and it’s an instant friendship!”

Your tax-deductible gift today will help fund the work of Associate Professor Leszek Lisowski and his team. They’re on the cusp of something that will help many more children like Teddy.

Leszek’s team have created pre-clinical models, using stem cells, so they can understand CTNNB1 and its impact on the brain.

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We’re so close, which is why we need your help today. Research on Teddy’s condition has no government funding. This work relies on donations from everyday people like you.

We’re working towards a therapy that will work on every child, so one day there will be a newborn screening test to immediately diagnose and treat the child before a parent even sees any symptoms.

There’s a lot of unknowns about this disease, but what we do know is the sooner a child is helped, while they are growing and developing, the greater the impact on their lives.

Please donate today and give Teddy a voice. Together, we can give the 1 in 20 kids facing a birth defect or genetic disease like Teddy hope for a healthier, brighter future.

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