Hannes has PIGW-CDG, which causes seizures, cognitive disabilities, developmental delays and muscle weakness. CDG, or Congenital Disorders of Glycosylation, encompasses a group of devastating and rare genetic diseases that disrupts how cells function throughout the entire body, including the brain, organs and muscles.

But Hannes is miraculously learning new skills. The little fighter is army crawling and sitting, both of which which doctors believed unlikely. DRUG REPURPOSING gives him, and others like him, a chance to continue developing. It's a fast path to discovering treatments while these children are young, at peak neuro development, and potential is limitless. We have already partnered with the biotech lab, Perlara, and are raising $55,000 to see the project through to completion.