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the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research.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the largest research meeting in the world specifically focused on SMA and seeks to create open communication of early, unpublished data to accelerate the pace of research.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

July 16, 2018

Summit of Strength Program Kicks Off in Cincinnati

Summit of Strength Program Kicks Off in Cincinnati

As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support.

On Saturday, Cure SMA held its inaugural Summit of Strength in Cincinnati, OH. This is the first of 16...

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Topics: Support & Care, Events & Fundraising, Front Page News

July 12, 2018

Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women's Hospital

Cure SMA Awards $300,000 Grant to Kevin Hodgetts, PhD, The Brigham and Women's Hospital

Cure SMA has awarded a $300,000 preclinical drug discovery grant to Kevin Hodgetts, PhD, at the Brigham and Women’s Hospital, for his project, " Pre-Clinical Development of LDN-5178 for the Treatment of SMA.”

This grant will be conducted by two academic research teams...

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Topics: Our Impact, Research, Front Page News

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