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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Cure SMA Awards $140,000 Grant to Megerditch Kiledjian, PhD, of Rutgers

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Cure SMA has awarded a $140,000 research grant to Megerditch Kiledjian, PhD, at Rutgers, The State University of New Jersey, for his project, “Novel Strategies to Increase SMN2 RNA.” 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. All individuals

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Senate HELP Committee Passes Innovation Bills

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The Senate Health, Education, Labor and Pensions (HELP) Committee has passed 7 bills out of committee as part of its “step-by-step” approach to Innovation and 21st Century Cures. Among them is The Advancing Research for Neurological Diseases Act of 2015 (S.849), sponsored by Sens. Isakson (R-Ga.) and Murphy (D-Conn.), which would expand research on neurological

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Update on 21st Century Cures/Innovation: the Senate’s “Step-by-Step” Approach

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Cure SMA has been carefully monitoring the consideration of 21st Century Cures on Capitol Hill. As you know, the House passed legislation in July last year, but the Senate has not acted on the bill or introduced their own version of “Innovation” legislation. Senator Alexander (R-TN), Chairman of the Senate Health, Education, Labor & Pensions

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Cure SMA-Funded Researcher Publishes Paper on Biomarker Study

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Cure SMA-funded researcher Stephen Kolb has published a paper in the journal Annals of Clinical and Translational Neurology. This paper reported on the baseline results from an ongoing biomarker and natural history study comparing infants affected by SMA to healthy infants of the same age. Research suggests that treatment for SMA may be more successful

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Cure SMA Receives Generous Donation from Fighting for Kaiden Foundation

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Cure SMA would like to thank the Fighting for Kaiden Foundation for their generous donations to Cure SMA programs. That generosity is providing both support for today and hope for the future to those affected by SMA. The foundation recently donated 15 Leckey Advanced Bath Chairs, two EASyS Strollers, and two large boxes of toys

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