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Community Spotlight: The Zmaczynski Family
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 develop at different rates” speech. […]
Read More ›Community Spotlight: Doug McCullough
In 2014, Doug McCullough gave a TEDx talk at a Johnson & Johnson event in New Jersey that focused on disability inclusion in the workplace. His speech, A Billion People […]
Read More ›Cure SMA Concert for a Cure Reaches $2 Million Milestone
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 Annual Concert for a Cure […]
Read More ›Community Spotlight: The Colone Family
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 child with SMA. Victoria Colone […]
Read More ›Updated 2018 SMA Standards of Care Statements Available Online
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 for families and healthcare providers. […]
Read More ›Illinois Adopts Permanent SMA Screening
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 to a number of states […]
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