News
August 16, 2018
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. These documents are updates of the Standard of Care document issued in 2007.
The 2018 recommendations emphasize that "a...
Topics: Support & Care, Research, Front Page News
August 15, 2018
Cure SMA Fall Event Season Kicks Off
The month of August marks not only SMA Awareness Month but the start of our fall event season. SMA Day with the Chicago Cubs, the Colorado Walk-n-Roll, and the Texas Bowl-a-Thon are just a few events that kicked off the season within the first...
Topics: Community & Awareness, Events & Fundraising, Front Page News
August 15, 2018
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 who have already adopted permanent SMA screening, including Missouri, Utah, Minnesota and...
Topics: Our Impact, Advocacy, Front Page News
August 13, 2018
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 being a public health researcher and masters student. Heather is a lifelong Pittsburgh resident and lives with...
Topics: Community & Awareness, Front Page News
August 3, 2018
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the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research. The meeting also furthers...
Topics: Conference, Research, Front Page News
August 1, 2018
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 kept falling every time I tried to run and was the last to complete the one-mile run,” said...
Topics: Community & Awareness, Our Impact, Front Page News
July 31, 2018
August is SMA Awareness Month!
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. August is a great time to spotlight the work our community does year-round to raise awareness of and...
Topics: Community & Awareness, Events & Fundraising, Front Page News
July 27, 2018
2018 SMA Researcher Meeting Summary: Clinical Research Studies for SMA
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 of research. The meeting also furthers...
Topics: Conference, Research, Front Page News
July 25, 2018
2018 SMA Researcher Meeting Summary: Basic Research Podium Presentations
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 of research. The meeting also furthers...
Topics: Conference, Research, Front Page News
July 23, 2018
2018 SMA Researcher Meeting Special Session Summary: Clinical and Basic Questions of SMA in the Era of SMN Repletion: Challenge and Opportunity
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 of research. The meeting also furthers...
Topics: Conference, Research, Front Page News
CureSMA
@CureSMA
CureSMA
