Cure SMA Announces Expanded Phase 3 of SMA Industry Collaboration

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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 organizations, to share information, ideas, and data. The SMA Industry Collaboration works together to address scientific, clinical and regulatory […]

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Hope on the Hill Congressional Dinner Raises $200,000

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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 fund advocacy efforts, research, and family support services. Since 2011,

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December Webinar on SMA Treatments and Clinical Trials Now Available Online

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A recording of the December 13th webinar updating the community on SMA treatments and clinical trials is now available online. A PDF of the webinar presentation is also available for download. An update on the status of dosing for Spinraza across the United States included the following information: As of October 2018, ~2,700 patients have

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Cure SMA Funding Leads to 16 New Research Publications in 2018

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An important goal of our research funding strategy is to share scientific findings with the broader scientific community. Scientists who receive Cure SMA funding often publish their findings in peer-reviewed journals. This means that other scientists can learn from their results, which will pay dividends across the wider landscape of SMA research—allowing us to multiply

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Community Spotlight: The Berkovits Family

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When Milo Berkovits was seven months old, his daycare teacher noticed he was not reaching his milestones. What followed from there on were visits to three different pediatricians, an early intervention assessment, a review by a private occupational therapist, another assessment by a private physical therapist and finally a neurologist visit. At nine months old,

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Biogen Issues Q4 Community Statement on Spinraza

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Bigoen has provided the below community statement on Spinraza.  Dear Members of the SMA community, As we approach the two-year anniversary of the U.S. Food and Drug Administration’s (FDA) approval of SPINRAZA® (nusinersen), we want to thank you for your ongoing support. We share your commitment to advancing research to improve the lives of those

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AveXis Issues Community Statement on BLA Acceptance

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AveXis has provided the following community statement on the BLA submission and acceptance for their investigational therapy, AVXS-101 – now known as ZOLGENSMA®. Dear SMA Community, We are providing this update to the SMA community in the U.S. at the request of Cure SMA. Following our recent October update about our Biologics License Application (BLA)

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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

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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 Advisory Committee adopted SMA to their Newborn Screening Panel. The state government

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 Read More »

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