News
October 23, 2018
NDEAM Spotlight: Jaclyn Greenwood
The below guest blog post was written by Jaclyn Greenwood in honor of National Disability Employment Awareness Month. Jaclyn is a board certified genetic counselor who also lives with SMA type 2.
My name is Jaclyn Greenwood and I have SMA type 2. I am fortunate to have a career...
Topics: Community & Awareness, Front Page News
October 19, 2018
National Disability Employment Awareness Month Spotlight: Kim Hill
The below NDEAM Spotlight was written by Kim Hill, Disability Integration Specialist at the Oklahoma Department of Emergency Management, who also lives with SMA Type II.
Hello! My name is Kimberly or Kim Hill. I am a 34-year-old from Oklahoma with SMA Type II. I am trached and...
Topics: Community & Awareness, Front Page News
October 18, 2018
Register for Cure SMA's First National Disability Employment Awareness Month Webinar
October is National Disability Employment Awareness Month (NDEAM)! In its honor, Cure SMA is hosting our first NDEAM webinar where the audience will hear directly from adults living with SMA in the workforce. Register for Cure SMA’s first
Topics: Community & Awareness, Front Page News
October 18, 2018
AveXis Issues Community Statement on FDA Filing for SMA Type I
AveXis has provided the following community statement on their FDA filing for SMA type I.
Dear SMA Community,
AveXis, a Novartis company, is pleased to let you know that we have submitted regulatory applications for AVXS-101 in the U.S., Europe and Japan for use in infants with SMA Type 1. This is an important and exciting initial...
Topics: Clinical Trials, Front Page News
October 18, 2018
AveXis Files for FDA Approval of Gene Therapy for Spinal Muscular Atrophy
Type I
AveXis, Inc., a Novartis company, today announced that they have filed for FDA approval of AVXS-101, a gene therapy that replaces the survival motor neuron 1 (SMN1) gene, which is missing or mutated in individuals with SMA.
This first filing is for intravenous (IV) delivery of gene...
Topics: Clinical Trials, Front Page News
October 17, 2018
North Carolina to Screen Newborns for SMA Through Early Check
Early Check, a new research study led by RTI International, is now available for newborn babies in North Carolina. Early Check is a free screening study designed to identify children with rare health conditions before symptoms appear and study the benefits of early treatments. New and...
Topics: Our Impact, Advocacy, Front Page News
October 17, 2018
Breakthrough Prize Awarded to Adrian Krainer and Frank Bennett for SMA Research Leading to Spinraza
Collaborators Adrian Krainer, of Cold Spring Harbor Laboratory, and C. Frank Bennett, from Ionis Pharmaceuticals, received the 2019
Topics: Research, Front Page News
October 10, 2018
Cure SMA Receives Generous Funding from Luke 18:1 Foundation
Cure SMA would like to thank the Luke 18:1 Foundation for their generous donations to our equipment pool and research programs. The foundation's generosity will provide support and hope to all those affected...
Topics: Community & Awareness, Support & Care, Front Page News
October 9, 2018
SMA Care Center Network and Clinical Data Registry Launched
Cure SMA today announced the launch of our SMA Care Center Network. The SMA Care Center Network is the centerpiece of our efforts to address the changing landscape of SMA. The goal of the SMA Care Center Network is to develop an...
Topics: Community & Awareness, Support & Care, Front Page News
October 8, 2018
New Spinraza Data Presented at Annual Congress of the World Muscle Society Demonstrate Benefits in Treating Presymptomatic Infants with SMA
Biogen, Inc. announced new interim results from NURTURE, an ongoing open-label, single-arm efficacy and safety study of SPINRAZA® (nusinersen) in 25...
Topics: Clinical Trials, Research, Front Page News
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