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

March 12, 2018

Cure SMA Launches Second Annual Community Survey to Address Important Issues in SMA Treatment

Cure SMA Launches Second Annual Community Survey to Address Important Issues in SMA Treatment

Dear Members of the SMA Community,

For the past several years, we’ve been working to collect data and information on our community’s experiences, goals, hopes, and challenges. We know that the voice of our community is powerful. By sharing our stories, we can communicate...

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Topics: Community & Awareness, Research, Front Page News

March 9, 2018

Indiana is the Fourth State to Adopt Permanent SMA Screening

Indiana is the Fourth State to Adopt Permanent SMA Screening

Last night, Governor Eric Holcomb of Indiana signed HB 1017, adding spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID) to the state’s newborn screening panel.

The bill makes Indiana the fourth state in the country to adopt permanent SMA screening, following...

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Topics: Community & Awareness, Advocacy, Front Page News

March 6, 2018

Awareness is Best Raised When We Work Together

Awareness is Best Raised When We Work Together

When a loved one is affected by spinal muscular atrophy, whether recently diagnosed or living with SMA for a while, you want to make a difference in their life and in the lives of all those affected by SMA.

At Cure SMA, we believe in the power of the SMA community working together....

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

February 28, 2018

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

SMA Newborn Screening Moves Forward in Indiana, Ohio and Georgia

The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in several states.

Indiana Poised to Become the Fourth State to Adopt SMA Screening

In Indiana, HB 1017 has been passed by both the House and Senate, and is...

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Topics: Community & Awareness, Advocacy, Front Page News

February 28, 2018

#ShowYourRare and Raise SMA Awareness on World Rare Disease Day

#ShowYourRare and Raise SMA Awareness on World Rare Disease Day

Rare Disease Day is today, February 28! And we’re calling on our entire spinal muscular atrophy community to get involved.

Rare Disease Day is important to us because it is a time for individuals impacted by a rare disease—or those whose loved ones are impacted—to...

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Topics: Community & Awareness, Advocacy, Front Page News

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