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 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 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

June 25, 2018

Thank You For a Wonderful 2018 Annual SMA Conference!

Thank You For a Wonderful 2018 Annual SMA Conference!

Thank you to everyone who attended the 2018 Annual SMA Conference at the Hilton Anatole Hotel in Dallas, Texas! It was an impactful weekend of community, research and fun.

While the final numbers are still being counted, we are happy to announce that, including on-site registration,...

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Topics: Community & Awareness, Conference, Front Page News

June 7, 2018

Traveling with SMA

Traveling with SMA

As the summer season nears, many families will make plans to travel across the country to exciting destinations or to spend time with those they love. This is no different for those affected by SMA.

Although travel can present challenges, regardless of distance or method chosen, below...

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Topics: Community & Awareness, About SMA, Front Page News

April 24, 2018

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

SMA Community Leaders to Gather in Washington DC to Network, Learn and Advocate

On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for two days of networking, learning, and advocacy. The activities include a day of advocacy on Capitol Hill, meeting with House and...

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Topics: Community & Awareness, Advocacy, Front Page News

April 6, 2018

SMA Newborn Screening Guidelines Published in Journal of Neuromuscular Diseases

The recent decision of the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to recommend SMA for addition to the RUSP, as well as the implementation of SMA newborn screening (NBS) by several states, has ushered in the ability to identify infants with...

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

April 4, 2018

Nathan Yates, Inspiring Others

Nathan Yates, Inspiring Others

Growing up in Virginia, Nathan Yates always had a vision for his future. From an early age, he became interested in finance, and as a teenager managed his own small portfolio of stocks. Diagnosed in 1989, he also lives with spinal muscular atrophy type 2. To date, Nathan’s diagnosis has...

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Topics: Community & Awareness, Front Page News

March 20, 2018

The Discovery of SMA

The Discovery of SMA

In 2016, the spinal muscular atrophy community celebrated the approval of the first-ever treatment that targets the underlying genetic cause of SMA. This was a milestone more than 100 years in the making, made possible by dedicated researchers, and the community that supported their...

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Topics: Community & Awareness, About SMA, Front Page News

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