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...

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Topics: Community & Awareness, Advocacy, Front Page News

February 21, 2019

Community Spotlight: Amber Bosselman

Community Spotlight: Amber Bosselman

Amber Bosselman is your typical 22-year-old college senior. She is currently studying psychology in Idaho and planning to get her master’s degree in industrial psychology. Amber’s life is similar to other students, except she was born with a rare disease called spinal muscular...

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Topics: Community & Awareness, Conference, Front Page News

February 13, 2019

Show Your Rare. Show You Care.

Show Your Rare. Show You Care.

1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare...

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Topics: Community & Awareness, Support & Care, 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...

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Topics: Community & Awareness, Advocacy, Front Page News

January 30, 2019

A Look Ahead to 2019 – From Cure SMA President, Kenneth Hobby

A Look Ahead to 2019 – From Cure SMA President, Kenneth Hobby

Dear SMA Community,

At the start of a new year, many of us begin to plan for the next 12 months. We anticipate the possibility of new achievements and look forward to new opportunities. In that spirit, we at Cure SMA wanted to share with you a look ahead to 2019.

We expect two...

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

January 29, 2019

The Cure SMA 2019 Goal List

The Cure SMA 2019 Goal List

Start 2019 strong! Plan out your year using the Cure SMA 2019 Goal List. Have you completed any of the items already? Which ones will you add to your plans for this year? Share on social media using the hashtag #Start2019Strong and tagging Cure SMA.

  1. Contact my

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

January 28, 2019

Cure SMA's 2019 Commitments to the Community

Cure SMA's 2019 Commitments to the Community

Dear Friends,

Welcome to 2019! The start of the new year is a fantastic opportunity for us to share the exciting things we have planned for the new year. Here are a few things you can expect from us in 2019.  Stay updated on the progress of our 2019 commitments by following us on...

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

January 17, 2019

Cure SMA is Thrilled to Launch Its New and Refreshed Endurance Program: Team Cure SMA

Cure SMA is Thrilled to Launch Its New and Refreshed Endurance Program: Team Cure SMA

Start 2019 Strong by becoming a Team Cure SMA runner, registering a team or donating to a race today. 

Team Cure SMA is an endurance program designed to connect runners and cyclists with Cure SMA. Cure SMA, is a 501(c)3...

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Topics: Community & Awareness, Events & Fundraising, 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 16, 2019

Heather Tomko on Goal-Setting for the New Year

Heather Tomko on Goal-Setting for the New Year

Heather Tomko, Ms. Wheelchair USA 2018, shares her tips for starting 2019 strong. Thank you to Heather for contributing to Cure SMA's Start 2019 Strong initiative! 

I’m not traditionally a big “New Year’s Resolutions” type of person. I...

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Topics: Community & Awareness, Front Page News

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