News

February 5, 2019

Register for Cure SMA's Advocacy 101 Webinar: Learn How to Make a Difference

Register for Cure SMA's Advocacy 101 Webinar: Learn How to Make a Difference

On Wednesday, February 20th at 12pm CST (10am PST/11am MST/1pm EST) Cure SMA’s Policy and Advocacy team will hold a webinar to update the SMA community on the current advocacy priorities. Advocacy can be confusing and intimidating, but it is critical to making sure that policymakers hear...

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Topics: Community & Awareness, Advocacy, Front Page News

January 16, 2019

Be A Part of Cure SMA's Valentine's Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act

Be A Part of Cure SMA's Valentine's Day Advocacy Campaign and Support the Newborn Screening Saves Lives Reauthorization Act

With Valentine’s Day rapidly approaching, we are showing our love for the Newborn Screening Saves Lives Reauthorization Act! Take action to support this very important bill by sending a Valentine’s Day card to your Members of Congress.

Valentine’s...

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Topics: Community & Awareness, Advocacy, Front Page News

January 10, 2019

Community Spotlight: Rebecca Smith and Micah Biello

Community Spotlight: Rebecca Smith and Micah Biello

When Micah Biello was diagnosed with spinal muscular atrophy type 1, no one in his family knew about the disease. Now four years later, Micah’s parents, grandparents, and other family members lead a Cure SMA Walk-n-Roll team named Micah’s Milers. The family has rallied around...

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Topics: Community & Awareness, Advocacy, Front Page News

December 28, 2018

Hope on the Hill Congressional Dinner Raises $200,000

Hope on the Hill Congressional Dinner Raises $200,000

The 8th Annual “Hope on the Hill” Congressional Dinner was held on Tuesday, November 27, 2018 at The Willard Hotel in Washington, DC. More than 170 people from the SMA community – including government and industry partners – attended the dinner which raised $200,000 to...

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Topics: Our Impact, Advocacy, Front Page News

December 14, 2018

Advocacy Year-in-Review 2018

Advocacy Year-in-Review 2018

For Cure SMA, 2018 has been a year of great progress. As we continue to make strides into 2019, it is important to take a moment to look back at all our successes. Thank you to all our families and advocates for your support and continued efforts to cure SMA. We wish you all a very Happy...

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Topics: Our Impact, Advocacy, Front Page News

December 10, 2018

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment

The SMA community has multiple victories to celebrate as the year comes to an end. Thank you to all our amazing families and advocates who have and continue to make this progress possible.

Virginia Adopts SMA Newborn Screening

Last month, Virginia’s Newborn Screening...

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Topics: Community & Awareness, Advocacy, Front Page News

November 13, 2018

8th Annual "Hope on the Hill" Congressional Dinner Will Be Held Later This Month in Washington D.C.

8th Annual

The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders to look forward to the...

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Topics: Advocacy, Events & Fundraising, Front Page News

October 30, 2018

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you as some states move closer to adoption of SMA Newborn Screening.

Kansas Adopts SMA Newborn Screening

Kansas has adopted SMA...

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Topics: Our Impact, Advocacy, Front Page News

October 17, 2018

North Carolina to Screen Newborns for SMA Through Early Check

North Carolina to Screen Newborns for SMA Through Early Check

Early Check, a new research study led by RTI International, is now available for newborn babies in North Carolina. Early Check is a free screening study designed to identify children with rare health conditions before symptoms appear and study the benefits of early treatments. New and...

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Topics: Our Impact, Advocacy, Front Page News

September 27, 2018

Community Spotlight: Adrienne Vollmer

Community Spotlight: Adrienne Vollmer

In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely advanced by the efforts of...

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Topics: Community & Awareness, Advocacy, Front Page News

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