Community Awareness

Community Spotlight: Brian Chiorello

December 21, 2020
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Brian Chiorello is a Principal Service Delivery Manager at a financial services company near where he lives in Orlando, FL. He resides there with his […]

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Community Statement from AveXis Regarding Commitment to SMA Community Amid COVID-19 Pandemic

April 8, 2020
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          Dear SMA Community, Like many organizations across the United States and around the world, AveXis is closely monitoring the coronavirus […]

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Community Statement from Genentech on Risdiplam Approval Timeline

April 7, 2020
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        Dear SMA Community, As part of our ongoing partnership and following your request to receive important information about the risdiplam clinical […]

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Celebrate Rare Disease Day 2020 with Cure SMA

February 7, 2020
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This year, Rare Disease Day occurs on February 29—the rarest day of all! Spinal muscular atrophy (SMA) affects 12,000 people in the U.S. Yet, the […]

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Lights…Camera…Action! Search Is On for Child with SMA to Appear in NBC Television Pilot

February 6, 2020
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Cure SMA is excited to support casting directors from NBC as they search for boys and girls from the SMA community who are interested in […]

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Community Statement from Scholar Rock Regarding SRK-015

January 10, 2020
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Scholar Rock, a clinical-stage biopharmaceutical company focused on the treatment of serious diseases in which protein growth factors play a fundamental role, today highlighted key […]

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Community Spotlight: Angela Wrigglesworth

October 31, 2019
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October has been National Disability Employment Awareness Month, and throughout the month, you have heard stories about adults in the workforce who live with SMA. […]

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Community Spotlight: Steven Verdile

October 29, 2019
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October has been National Disability Employment Awareness Month, and throughout the month, you have heard stories about adults in the workforce who live with SMA. […]

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Cure SMA and Ionis Announce Holiday Card Contest

October 11, 2019
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We are excited to share that Cure SMA and Ionis Pharmaceuticals are once again teaming up for a holiday card contest! This contest is open […]

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Cure SMA Partners with the Clements Twins and Nail & Bone

October 9, 2019
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The Clements Twins, Ava & Leah, are raising money and awareness for spinal muscular atrophy (SMA) through a partnership with Nail & Bone, a socially […]

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