Latest News
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 […]
Read More ›Heather Tomko Crowned as Ms. Wheelchair USA 2018
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. Wheelchair USA in addition to […]
Read More ›2018 SMA Researcher Meeting Summary: SMA Therapy Development
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the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace […]
Read More ›Community Spotlight: Brynne Willis
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 falling behind her peers. “I […]
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