News

February 13, 2019

Show Your Rare. Show You Care.

Show Your Rare. Show You Care.

1 in 20 people will live with a rare disease at some point in their life. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare...

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

January 15, 2019

Fall 2018 Issue of Directions Now Available

Fall 2018 Issue of Directions Now Available

The Fall 2018 issue of Directions is now available online. Please visit our Support & Care Publications page to download this issue or past issues of...

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

January 7, 2019

Teen and Young Adult Survey Extended Through January 21st

Teen and Young Adult Survey Extended Through January 21st

Are you or a family member between the ages of 12 and 25? Do you want to share your opinion on living with SMA and what is important to you regarding treatment options?

In late November, Cure SMA launched the SMA Teen and Young Adult Clinical Meaningfulness Survey. Anyone with SMA...

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Topics: Support & Care, Research, Front Page News

December 4, 2018

Fall 2018 Issue of Compass Now Available

Fall 2018 Issue of Compass Now Available

The fall 2018 issue of Compass is now available online.

This issue of Compass covers the SMA Care Center Network and its goal of developing an evidence-based standard of care to improve the lives of people with...

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Topics: Support & Care, Our Impact, Front Page News

November 29, 2018

Register for Cure SMA's Webinar on SMA Treatments and Clinical Trials

Register for Cure SMA's Webinar on SMA Treatments and Clinical Trials

On Wednesday, December 12th, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST) Cure SMA will hold a webinar updating the community on the latest information on SMA treatments and trials. Topics covered will include:

  • AveXis's BLA filing with the FDA
  • Status of access...

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Topics: Support & Care, Clinical Trials, 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 10, 2018

Cure SMA Receives Generous Funding from Luke 18:1 Foundation

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...

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

October 9, 2018

SMA Care Center Network and Clinical Data Registry Launched

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...

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

September 26, 2018

Cure SMA Launches a Family Support App for Your Mobile Device!

Cure SMA Launches a Family Support App for Your Mobile Device!

Cure SMA is excited to announce the launch of a new mobile app for the SMA community. The Cure SMA Guide app is a family support program that takes a new approach to provide useful tools and information related to SMA care, to use at home and on-the-go. The app is now...

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

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