News

November 1, 2018

Summit of Strength Program Receives Positive Feedback and Increases Attendance

Summit of Strength Program Receives Positive Feedback and Increases Attendance

Attendance and feedback have been extremely positive for this new program.

The Cure SMA Summit of Strength Program kicked off in July and has continued to grow with great success! The Summit of Strength is a day of community and learning; it brings together families in their local...

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Topics: Community & Awareness, Support & Care, Front Page News

October 31, 2018

Registration is Now Open for the 2019 Annual SMA Conference!

Registration is Now Open for the 2019 Annual SMA Conference!

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...

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Topics: Conference, Front Page News

October 30, 2018

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

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...

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Topics: Our Impact, Advocacy, Front Page News

October 24, 2018

Meet the NDEAM Webinar Panelists

Meet the NDEAM Webinar Panelists

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...

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Topics: Community & Awareness, Front Page News

October 23, 2018

NDEAM Spotlight: Jaclyn Greenwood

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...

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Topics: Community & Awareness, Front Page News

October 19, 2018

National Disability Employment Awareness Month Spotlight: Kim Hill

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...

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Topics: Community & Awareness, Front Page News

October 18, 2018

Register for Cure SMA's First National Disability Employment Awareness Month Webinar

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

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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...

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Topics: Clinical Trials, Front Page News

October 18, 2018

AveXis Files for FDA Approval of Gene Therapy for Spinal Muscular Atrophy
Type I

AveXis Files for FDA Approval of Gene Therapy for Spinal Muscular Atrophy <br> 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...

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Topics: Clinical Trials, Front Page News

October 17, 2018

North Carolina to Screen Newborns for SMA Through Early Check

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...

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Topics: Our Impact, Advocacy, Front Page News

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