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SMARD Awareness bill now law

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HARTFORD - On Wednesday Governor Dannel Malloy signed a bill into law that creates SMARD Awareness Day.

Spinal Muscular Atrophy with Respiratory Distress is an incredibly rare disease.

Nine-year-old Hunter Pageau from Connecticut was the inspiration behind the bill.

The hope is to bring awareness to the disorder and get people involved in finding a cure.

The family has dealt with many challenges, the latest one being the recent breakdown of Hunter’s transportation van.

A family friend has set up a GoFundMe page in order to help Hunter and his family repair the van.