News

August 15, 2018

Cure SMA Fall Event Season Kicks Off

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...

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Topics: Community & Awareness, Events & Fundraising, Front Page News

August 15, 2018

Illinois Adopts Permanent SMA Screening

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...

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Topics: Our Impact, Advocacy, Front Page News

August 13, 2018

Heather Tomko Crowned as Ms. Wheelchair USA 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...

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Topics: Community & Awareness, Front Page News

August 3, 2018

2018 SMA Researcher Meeting Summary: SMA Therapy Development

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the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research.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...

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Topics: Conference, Research, Front Page News

August 1, 2018

Community Spotlight: Brynne Willis

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...

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Topics: Community & Awareness, Our Impact, Front Page News

July 31, 2018

August is SMA Awareness Month!

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...

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Topics: Community & Awareness, Events & Fundraising, Front Page News

July 27, 2018

2018 SMA Researcher Meeting Summary: Clinical Research Studies for SMA

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...

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Topics: Conference, Research, Front Page News

July 25, 2018

2018 SMA Researcher Meeting Summary: Basic Research Podium Presentations

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...

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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

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...

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Topics: Conference, Research, Front Page News

July 17, 2018

Wisconsin Moves One Step Closer to SMA Newborn Screening

Wisconsin Moves One Step Closer to SMA Newborn Screening

The Wisconsin Secretary of Health Services, Linda Seemeyer, recently approved the addition of SMA to the newborn screening panel through the administrative rule making process. SMA was nominated in November 2017 for addition to the Wisconsin panel. In December 2017, the Umbrella Committee of...

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Topics: Our Impact, Advocacy, Front Page News

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