News

November 13, 2018

8th Annual "Hope on the Hill" Congressional Dinner Will Be Held Later This Month in Washington D.C.

8th Annual

The 8th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 27, bringing together SMA families, government officials, and industry leaders to look forward to the...

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Topics: Advocacy, Events & Fundraising, Front Page News

November 6, 2018

Cure SMA is Thrilled to Launch a New Support Program for Teens and Adults with SMA

Cure SMA is Thrilled to Launch a New Support Program for Teens and Adults with SMA

Along with funding SMA research and care, Cure SMA provides thousands of individuals and families with vital family support and resources that help people navigate life with SMA. In addition to our current support programs, Cure SMA is thrilled to launch a brand-new program specifically for...

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

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