The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) announced that they have accepted spinal muscular atrophy into the review process for the Recommended Uniform Screening Panel (RUSP). The RUSP is a list of conditions that all newborns in the US are recommended to be screened for. The RUSP application for SMA
RUSP Nomination for SMA Accepted into Evidence Review Read More »
Cure SMA is thrilled to welcome Biogen back as a National Premier Partner for 2017. The National Premier Partnership represents the highest level of support for the SMA community. As part of their partnership, Biogen will be sponsoring all walk-n-rolls, golf events, galas and awareness events across the US for the entirety of 2017. Biogen
Cure SMA Welcomes Back Biogen as a National Premier Partner for 2017 Read More »
Cure SMA has awarded a $75,000 research grant to Yong-Chao Ma, PhD, Ann & Robert H. Lurie Children’s Hospital of Chicago, for his project, “Regulation of Motor Neuron Defects by Cdk5 Signaling in SMA”. Dr. Ma and his team have found that the activity of a protein called Cdk5, cyclin-dependent kinase 5, is significantly increased
Cure SMA has awarded a $75,000 research grant Stephen J. Kolb at Ohio State University, for his project, “Arrested Development or Neurodegeneration? An approach to understand developmental motor neuron pathology in SMA”. Dr. Kolb and his team will create a large animal model of newborn infants with SMA. They will use this model to understand
Cure SMA Awards $75,000 Grant to Stephen J. Kolb, PhD, Ohio State University Read More »
Cure SMA has awarded a $75,000 research grant to Chris Lorson, PhD, at the University of Missouri, for his project, “Examining the role of astrocytes and the influence upon lower motor neuron susceptibility in SMA.” SMA is caused by a mutations in the SMN1 gene. This gene is expressed in every cell in the body;
Cure SMA Awards $75,000 Grant to Chris Lorson, PhD, University of Missouri Read More »
We are excited to announce that two additional grants have been added to this round of basic research funding, which brings the total to $1.03 million in grants for this year. We sincerely thank our incredible community and its growing support, which made this extra investment possible. Whether families raising funds and awareness, researchers investigating
Yesterday, the House of Representatives passed the American Health Care Act (AHCA). The House passed legislation included an amendment that increases funding to mitigate a potential rise in health care premiums for those with pre-existing conditions; however, concerns remain about the impact this bill could have on SMA patients’ access to care (see previous update
Update on the Passage of the AHCA Read More »
After a failed attempt in March, Members of Congress are trying once again to assemble legislation to repeal key parts of the Patient Protection and Affordable Care Act (ACA). The latest attempt, called the American Health Care Act (AHCA), could impact SMA patients’ access to health care services by allowing states to opt out of
Cure SMA Grassroots Alert – AHCA Read More »
Cure SMA has awarded a $140,000 research grant to Christine DiDonato, PhD, Ann & Robert H. Lurie Children’s Hospital of Chicago, for her project, “Skeletal muscle activators as potential modulators of muscular weakness in SMA.” In SMA, the ability of the muscle to contract is impacted. This proposal focuses on skeletal muscle proteins and their
Biogen will present Phase 3 end of study SPINRAZA® (nusinersen) data from CHERISH, which demonstrated a highly statistically significant and clinically meaningful improvement in motor function in children with later-onset (most likely to develop Type 2 or Type 3) spinal muscular atrophy (SMA) compared to untreated children. The overall findings continue to support the robust
Biogen Releases New Data from Cherish and Nurture Trials Read More »
