News

March 8, 2019

Cure SMA Advocates for SMA Community at ICER Hearing

On Thursday, March 7, Cure SMA testified on behalf of the SMA community at a meeting of the Institute for Clinical and Economic Review (ICER). ICER is an independent health policy group that evaluates the effectiveness of drug treatments, and the costs associated with those treatments.

The purpose of the meeting was to review both...

READ MORE   |  

Topics: Research, Advocacy, Front Page News

February 25, 2019

Community Spotlight: Kristen Smith

Community Spotlight: Kristen Smith

The SMA community has been lobbying state and federal government for years. Kristen Smith shares how she became involved with advocacy.

Kristen Smith describes herself as an artist and advocate. A powerful combination during a time where people across the country are standing...

READ MORE   |  

Topics: Community & Awareness, Advocacy, Front Page News

February 22, 2019

Arkansas and Florida Adopt SMA Newborn Screening

Arkansas and Florida Adopt SMA Newborn Screening

We are thrilled to share that both Arkansas and Florida recently adopted SMA to their state newborn screening panels! They now join the growing list of states that have adopted SMA to their newborn screening panels.

Arkansas Adopts SMA Newborn Screening

Congratulations to...

READ MORE   |  

Topics: Community & Awareness, Advocacy, Front Page 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...

READ MORE   |  

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...

READ MORE   |  

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...

READ MORE   |  

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...

READ MORE   |  

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...

READ MORE   |  

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...

READ MORE   |  

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...

READ MORE   |  

Topics: Advocacy, Events & Fundraising, Front Page News

Items 1 - 10 of 110  12345678910Next

© 2019 Cure SMA | Cure SMA is recognized as tax-exempt under section 501(c)(3) of the Internal Revenue Code. EIN: 36-3320440. | Privacy Policy

Powered by Blackbaud
nonprofit software