Community Spotlight

Community Spotlight: Rebecca Smith and Micah Biello

January 10, 2019
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When Micah Biello was diagnosed with spinal muscular atrophy type 1, no one in his family knew about the disease. Now four years later, Micah’s […]

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Community Spotlight: The Jankowski Family

January 3, 2019
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It has been a little over two years since doctors told Chris and Kelly Jankowski that their first-born son, William, had spinal muscular atrophy (SMA) […]

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Community Spotlight: The Berkovits Family

December 18, 2018
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When Milo Berkovits was seven months old, his daycare teacher noticed he was not reaching his milestones. What followed from there on were visits to […]

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Community Spotlight: Adrienne Vollmer

September 27, 2018
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In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in […]

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Community Spotlight: Allyson Henkel

September 24, 2018
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My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years […]

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Community Spotlight: The Lasko Family

September 17, 2018
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After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as […]

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