Front Page News
Cure SMA Provides Funding for “Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)” Published in Neurology
In a recent paper titled, “Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)” Dr. Chad Heatwole and others describe a cross-sectional study of […]
Read More ›Community Spotlight: The Anton Jensen Family
Quinn Anton Jensen was diagnosed with spinal muscular atrophy (SMA) type II on March 2007 in Iowa City. Quinn’s mom, Nancy, recalls the genetic testing […]
Read More ›Community Spotlight: The Nelson Family
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 […]
Read More ›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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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. […]
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