News

August 21, 2018

Community Spotlight: Doug McCullough

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. His speech, A Billion People in the Shadows, represents the 1 Billion...

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Topics: Community & Awareness, Front Page News

August 21, 2018

Cure SMA Concert for a Cure Reaches $2 Million Milestone

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 Annual Concert for a Cure reached a very exciting milestone of $2 Million.

“We are still in awe of the dedication, support and commitment that...

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

August 21, 2018

Community Spotlight: Victoria Colone

Community Spotlight: Victoria Colone

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 was 22 weeks pregnant when she learned through an amniocentesis test that her son, Jaxon,...

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Topics: Community & Awareness, Front Page News

August 17, 2018

Cure SMA Provides Funding and Recruitment for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!

Cure SMA Provides Funding and Recruitment for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!

A recent paper published in the Journal of Contemporary Clinical Trials Communications titled, “Recruitment & retention program for the NeuroNEXT SMA Biomarker Study: Super Babies for...

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Topics: Our Impact, Research, Front Page 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...

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Topics: Support & Care, Research, Front Page 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

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