Amelia and Makenzie's juvenile Batten disease (CLN3) story.

Описание к видео Amelia and Makenzie's juvenile Batten disease (CLN3) story.

The Kahn family created ForeBatten Foundation (https://www.forebatten.org/) shortly after their twin girls were diagnosed with juvenile Batten disease (CLN3) in 2017. “Fore” means “ahead” or “forward,” and those familiar with golf know it’s heard when something unavoidable is heading your way—much like Batten disease. Today, the girls experience vision loss, grand Mal seizures, severe childhood dementia, and are losing the ability to talk, walk, eat, and sleep. The Kahns are driven by hope that a treatment or cure can change the future for all children with CLN3.

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