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Community Spotlight: The Nelson Family

August 24, 2018
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Mary was 4 months old when her parents, Ryan and Kate Nelson, suspected something wasn’t quite right with their daughter; she wasn’t bearing weight on […]

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Community Spotlight: The Zmaczynski Family

August 23, 2018
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At 7 months old, Sarah Zmaczynski’s parents, Jill and John, noticed their daughter couldn’t bear weight on her legs. Sarah’s pediatrician responded with the “kids […]

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Community Spotlight: Doug McCullough

August 21, 2018
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In 2014, Doug McCullough gave a TEDx talk at a Johnson & Johnson event in New Jersey that focused on disability inclusion in the workplace. […]

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Cure SMA Concert for a Cure Reaches $2 Million Milestone

August 21, 2018
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The 2018 Cure SMA Concert for a Cure raised $210,000 on April 21, 2018. After combining many years of fundraising and hard work, the 18th […]

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Community Spotlight: The Colone Family

August 21, 2018
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In this Community Spotlight, Victoria Colone delves into the complexities of early diagnosis and treatment as a mom navigating the world of healthcare for her […]

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Updated 2018 SMA Standards of Care Statements Available Online

August 16, 2018
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The 2018 SMA Standards of Care recommendations were published in Neuromuscular Disorders in February 2018 and March 2018 and are available online through Open Access […]

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Illinois Adopts Permanent SMA Screening

August 15, 2018
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Last night, Governor Bruce Rauner of Illinois signed SB 456, adding spinal muscular atrophy (SMA) to the state’s newborn screening panel. The bill adds Illinois […]

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Heather Tomko Crowned as Ms. Wheelchair USA 2018

August 13, 2018
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The guest blog post below was written by Heather Tomko, sharing her experience in the Ms. Wheelchair USA 2018 pageant. She is the reigning Ms. […]

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2018 SMA Researcher Meeting Summary: SMA Therapy Development

August 3, 2018
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The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished […]

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Community Spotlight: Brynne Willis

August 1, 2018
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At 10 years old, Brynne Willis knew something was wrong; it was time for the Presidential Fitness Test required by public schools and she kept […]

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