A race against time

When we arrived on the scene there was nothing, and here we are nine years later on the cusp of a treatment that could extend the life of my child.
— Charlotte Benson, mother

A sense of urgency pervades Christiane’s family. She’s only 14, but her life expectancy is late teens or early 20s because she has Batten’s disease. Batten’s disease is a neurological disorder that causes blindness, seizures, loss of motor function and early death. Currently there’s no treatment and no cure.

But Christiane’s family has hope. They founded the Beyond Batten Foundation to spearhead a unique, cohesive strategy to match scientific resources with funding to drive research into this disease.

The foundation raised millions of dollars to move a team from Italy to the NRI to focus specifically on Batten disease research. This team made one amazing medical breakthrough – a drug that in animal models shows promise of slowing or stopping the progression of the disease. Now, a clinical trial is underway to see if the drug also works in humans.

The hope for this new drug doesn’t end with Batten’s disease. It could also bring relief to children with other similar conditions.