Cure SMA Awards $140,000 Grant to Christine Beattie, PhD, Ohio State University

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Cure SMA has awarded a $140,000 research grant to Christine Beattie, PhD, at the Ohio State University, for her project, “Identification of SMN:HuD bound RNAs critical for motor neuron development.” Because of a genetic mutation in the SMN1 gene, individuals with SMA don’t produce survival motor neuron protein (SMN protein) at high enough levels, causing […]

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Cure SMA Releases Schedule for the 2016 Annual SMA Conference

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Cure SMA has released the schedule for the 2016 Annual SMA Conference, which will be held at Disneyland in Anaheim, CA, June 16-19. This schedule includes the timeline of workshops and events, including the Meet and Greet, Researcher Relay Race, Teen Social, Newly Diagnosed Program, Family Friendly Poster Session, and PJ Party & Movie Night.

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AveXis Releases New Data on Phase 1 Clinical Trial

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AveXis has released new data from their current Phase 1 clinical trial testing AVXS-101, a systemic delivery of gene therapy for SMA. The data from this initial trial will inform future clinical studies of gene therapy approaches. “The past six months has been a period of significant progress for AveXis, as we completed a successful

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Record Number of Abstracts Submitted for the 2016 SMA Researcher Meeting

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Abstract submission is now closed for the 2016 SMA Researcher Meeting. We are excited to announce that we received 118 submissions, a record number. Our submissions come from researchers in 14 countries, six companies, and over 50 institutions. We expect over 300 researchers and clinicians from almost 100 organizations to attend the SMA Researcher Meeting.

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Senate HELP Committee Passes Another 7 Innovation Bills

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The Senate Health, Education, Labor and Pensions (HELP) Committee yesterday passed an additional 7 bills out of committee. Along with the 7 bills previously passed out of committee, that makes 14 bills in total that have passed out of committee as part of the Senate’s “step-by-step” approach to Innovation and 21st Century Cures. Among the

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Winter 2015 Issue of Directions Now Online

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The Winter 2015 issue of Directions is now available! Please visit our Support & Care Publications page to download this issue or past issues of Directions. Our biannual newsletter builds our community by sharing stories and experiences. Families from all over the world connect with each other through Cure SMA to chat, organize, and share

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Cure SMA-Funded Researchers Publish Paper on Motor Neuron and Astrocyte Defects

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Cure SMA-funded researcher Chien-Ping Ko has published a paper in the Journal of Neuroscience, called “Defects in Motoneuron–Astrocyte Interactions in Spinal Muscular Atrophy.” The research for this paper was supported by a donation from the Dhont Family Foundation to Cure SMA. Individuals with SMA don’t correctly produce survival motor neuron (SMN) protein at high enough

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Patients and Caregivers of Patients with Type II and III SMA Needed for Educational Research Survey

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I am a medical education researcher fielding a survey to individuals or caregivers of individuals with Type II or III spinal muscular atrophy (SMA) to understand their specific challenges as well as informational and educational needs. The purpose of the research is to develop a report to inform supporters of patient education of the real-world

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2016 Annual SMA Conference on Track to Break Attendance Records

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Registration for the Annual SMA Conference is well on its way to a record-setting number. Over 700 families and researchers have registered for the conference thus far—the highest number to this point in over five years! We are excited to have so many new and familiar faces joining us in June. If you have not

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Cure SMA Awards $140,000 Grant to Rashmi Kothary, MD, Ottawa Hospital Research Institute

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Cure SMA has awarded a $140,000 research grant to Rashmi Kothary, MD, at the Ottawa Hospital Research Institute for his project, ” Muscle satellite cell biology and muscle regeneration in Smn-depleted mice.” Because of a genetic mutation, individuals with SMA don’t produce survival motor neuron protein (SMN protein) at high enough levels. We know that

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