Community Awareness

Cure SMA is Thrilled to Announce the Establishment of our New Chapter in Puerto Rico!

February 7, 2024
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Led by Keishla Rolon, Ramon Rivera Vega, Elizabeth Serrano, Natasha Santiago, and Brenda Luciano, Cure SMA’s Puerto Rico chapter has already been hard at work […]

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August is SMA Awareness Month!

August 1, 2023
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Whether you have SMA, have a loved one with SMA, are a researcher, care provider, industry partner, or are new to the SMA community, SMA […]

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Cure SMA Holds Patient-Led Listening Session with FDA

October 4, 2022
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On Thursday, August 4, 2022, six members of the SMA community had the opportunity to talk directly with the U.S. Food and Drug Administration (FDA) […]

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Cure SMA Holds Patient-Led Listening Session with FDA

October 4, 2022
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On Thursday, August 4, 2022, six members of the SMA community had the opportunity to talk directly with the U.S. Food and Drug Administration (FDA) […]

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Community Spotlight: Shaakira Thomas and Family

August 13, 2021
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Every August, the spinal muscular atrophy (SMA) community unites, raises awareness, and shows our pride for SMA Awareness Month. This year, Shaakira Thomas and her family […]

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Community Spotlight: Dr. Arthur Burghes

June 8, 2021
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On the 25th anniversary of the SMA Researcher Meeting, we would like you to learn more about Dr. Burghes and his commitment to the Cure SMA […]

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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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Join Cure SMA for Our First-Ever Walk-n-Roll Virtual Celebration Ceremony

May 22, 2020
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Cure SMA will host our first-ever Virtual Walk-n-Roll Celebration Ceremony on Saturday, May 30, 2020 at 11 a.m. EDT/10 a.m. CDT/9 a.m. MDT/8 a.m. PDT. Join us […]

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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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