Registration is now open for the 2019 Annual SMA Conference! This year’s conference will be held at the Disneyland Hotel in Anaheim, CA from Friday, June 28 through Monday, July 1, 2019. We are excited to bring the conference back to a Disney location and hope you can join us! Disneyland Hotel, where the majority […]
Registration is Now Open for the 2019 Annual SMA Conference! Read More »
Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you as some states move closer to adoption of SMA Newborn Screening. Kansas Adopts SMA Newborn Screening Kansas has adopted SMA Newborn Screening and is working toward implementation. The Kansas Health
Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption Read More »
October is National Disability Employment Awareness Month (NDEAM)! Hear directly from adults living with SMA in the workforce. Register for Cure SMA’s first NDEAM webinar. The 60-minute webinar will be held on Wednesday, October 24 at 2:00 p.m. CDT. Register today Kaitlyn Yang Social media: @KaitlynYang At age nine, Kaitlyn Yang emigrated to the U.S.
Meet the NDEAM Webinar Panelists Read More »
October is National Disability Employment Awareness Month (NDEAM)! Hear directly from adults living with SMA in the workforce. Register for Cure SMA’s first NDEAM webinar. The 60-minute webinar will be held on Wednesday, October 24 at 2:00 p.m. CDT. Register today! Kaitlyn Yang @KaitlynYang At age nine, Kaitlyn Yang emigrated to the U.S. from China
Meet the National Disability Employment Awareness Month (NDEAM) Panelists Read More »
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 and job I enjoy. I
NDEAM Spotlight: Jaclyn Greenwood Read More »
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 use a ventilator full time and I
National Disability Employment Awareness Month Spotlight: Kim Hill Read More »
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 NDEAM webinar today. The 60-minute webinar will be held on Wednesday, October 24 at 2:00 p.m. CDT. NDEAM
Register for Cure SMA’s First National Disability Employment Awareness Month Webinar Read More »
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
AveXis Issues Community Statement on FDA Filing for SMA Type I Read More »
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 therapy. Based on typical practices, the expectation is
AveXis Files for FDA Approval of Gene Therapy for Spinal Muscular Atrophy
Type I Read More »
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 expectant mothers may enroll in the program online from
North Carolina to Screen Newborns for SMA Through Early Check Read More »
