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

January 15, 2019

Fall 2018 Issue of Directions Now Available

Fall 2018 Issue of Directions Now Available

The Fall 2018 issue of Directions is now available online. Please visit our Support & Care Publications page to download this issue or past issues of...

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Topics: Community & Awareness, Support & Care, Front Page News

January 15, 2019

Congratulations to the Winners of Cure SMA's Video Contest!

Congratulations to the Winners of Cure SMA's Video Contest!

Cure SMA recently hosted a video contest to raise SMA awareness and provide the opportunity for teens and young adults (aged 12 to 21) to share their experiences. The purpose of this contest is to raise awareness about the impact that SMA has on teens and young adults, and the strategies used...

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Topics: Community & Awareness, 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

January 7, 2019

Genentech, Roche and PTC Therapeutics Provide Update on Regulatory Filing for Risdiplam

Genentech, Roche and PTC Therapeutics Provide Update on Regulatory Filing for Risdiplam

On January 7th, PTC Therapeutics, Inc. provided a corporate update, which will be detailed as part of the company's presentation at the 37th Annual J.P. Morgan...

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Topics: Clinical Trials, Research, Front Page News

January 7, 2019

Teen and Young Adult Survey Extended Through January 21st

Teen and Young Adult Survey Extended Through January 21st

Are you or a family member between the ages of 12 and 25? Do you want to share your opinion on living with SMA and what is important to you regarding treatment options?

In late November, Cure SMA launched the SMA Teen and Young Adult Clinical Meaningfulness Survey. Anyone with SMA...

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Topics: Support & Care, Research, Front Page News

January 3, 2019

Community Spotlight: The Jankowski Family

Community Spotlight: The Jankowski Family

It has been a little over two years since doctors told Chris and Kelly Jankowski that their first-born son, William, had spinal muscular atrophy (SMA) type I. In the immediate wake of diagnosis, Cure SMA was able to help provide the Jankowskis with the resources to help them make decisions...

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Topics: Community & Awareness, Front Page News

January 2, 2019

Cure SMA Announces Expanded Phase 3 of SMA Industry Collaboration

Cure SMA Announces Expanded Phase 3 of SMA Industry Collaboration

Cure SMA is pleased to announce the launch of an expanded Phase 3 of our SMA Industry Collaboration. The SMA Industry Collaboration is a multi-faceted partnership that brings together pharmaceutical companies, Cure SMA, and other nonprofit...

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Topics: Our Impact, Research, 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

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