Author name: Sarah McCall

Biohaven Completes Enrollment in Pivotal Phase 3 Study

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Recently, Biohaven released a statement on the completed enrollment of their pivotal Phase 3 Study of Taldefgrobep Alfa in people with SMA. Check out Biohaven’s official press release here. About Taldefgrobep and the Phase 3 Trial Taldefgrobep is an investigational, muscle-targeted recombinant protein with the potential to enhance muscle mass and strength in people living […]

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The State of SMA – Toward Improved Therapeutics and Care

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Each year, Cure SMA collaborates with our Scientific Advisory Board to plan a Special Session that will be held during the Annual Research & Clinical Care Meeting. This Special Session is designed to focus on a topic that is currently of great interest to both researchers and clinicians. This year’s Special Session, “The State of

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Clinical Research and Drug Development Session Highlights from 2023 SMA Research & Clinical Care Meeting

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At the end of June, SMA researchers and clinicians from around the world met in Orlando, Florida, for the 2023 Annual SMA Research & Clinical Care Meeting.   The annual meeting provides an opportunity for SMA scientists and clinicians to share their most recent discoveries and learnings, and is an incubator for collaborations, including cross-disciplinary

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Key Congressional Committee Urges NIH to Address Unmet Needs of Individuals with SMA

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On July 27th, the U.S. Senate Appropriations Committee supported a Cure SMA-requested provision asking the National Institutes of Health (NIH) to address the unmet needs of individuals with spinal muscular atrophy (SMA) through new SMA research. The provision, which can be found on pages 132 & 133 of the fiscal year 2024 Labor-Health and Human

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Cure SMA Announces Expanded Phase 3 of Real World Evidence Collaboration

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Cure SMA is pleased to announce the launch of an expanded Phase 3 of the Real World Evidence Collaboration. The collaboration was established to leverage the experience, expertise and resources of pharmaceutical and biotechnology companies and nonprofit organizations involved in development of SMA therapeutics to guide the future direction of real world evidence collection and

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New DOT Rule Will Require Truly Accessible Lavatories on New Single Aisle Aircraft

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On the anniversary of the Americans with Disabilities Act, the U.S. Department of Transportation (DOT) announced a final rule that will require airlines to take short- and long-term action to make lavatories on new single-aisle aircraft more accessible for people with disabilities, including those who fly in a wheelchair. “The inability to safely access and

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SMA Scientists and Clinicians from Around the World Gather at the 27th Annual SMA Research & Clinical Care Meeting

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At the end of June, SMA researchers and clinicians from around the world met in Orlando, Florida, for the 2023 Annual SMA Research & Clinical Care Meeting.   The annual meeting provides an opportunity for SMA scientists and clinicians to share their most recent discoveries and learnings, and is an incubator for collaborations, including cross-disciplinary

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Thank You for an Amazing 2023 Annual SMA Conference!

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Thank you to everyone who attended the 2023 Annual SMA Conference at Disney’s Yacht & Beach Club in Orlando, Florida! It was an impactful weekend of opportunities to connect, learn, and have fun. We are happy to announce that, including on-site registration, there were over 3,200 attendees in total – a record for the Annual

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