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Minnesota Fact Sheet

 

Gavin Quimby – affectionately known as Super Gav after his love of superheroes – was diagnosed with MLD at age three and passed away at age five. Gavin and his family turned the fight against MLD into superhero level advocacy to ensure that children with rare diseases have the opportunity for NBS. Super Gav was not only a hometown hero in Winona, he inspired screening for children facing other rare diseases.

Gavin’s parents, Nick and Shanna Quimby, along with Senator Jeremy Miller and Minnesota’s NBS Committee passed a bill named The Super Gav Act to test newborns for several rare diseases – including another leukodystrophy called adrenoleukodystrophy or ALD. This NBS bill was
made to detect and treat diseases successfully before symptoms present. Since the Super Gav Act came into effect in February 2017, seventy children have come back positive for ALD, giving them an opportunity medical guidance because of NBS.

However, more work still needs to be done as the condition that Gavin battled, MLD, is not included on Minnesota NBS panel.

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