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

September 12, 2018

Cure SMA's Approach to Newborn Screening

Cure SMA's Approach to Newborn Screening

The complexities of newborn screening require a sophisticated, multifaceted approach. With this in mind, Cure SMA has been working on newborn screening through several different avenues, bringing our full resources to ensure that babies born with SMA have the opportunity to receive early...

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Topics: Support & Care, Advocacy, Research, Front Page News

August 31, 2018

Sweet Baby Zane Funds New Equipment Pool Item

Sweet Baby Zane Funds New Equipment Pool Item

Cure SMA is excited to announce that 12 new Panthera pediatric lightweight wheelchairs have been purchased thanks to generous funding from Sweet Baby Zane. These specific chairs are normally a large out-of-pocket expense for many families, as they cost over $6,000 each and are not usually...

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

August 28, 2018

Cure SMA Receives Generous Donation from the Cash Scanlon-Philips Foundation

Cure SMA Receives Generous Donation from the Cash Scanlon-Philips Foundation

Cure SMA would like to thank the Cash Scanlon-Philips Foundation for their generous donation to fund a years’ worth of type II newly diagnosed care packages. These care packages are sent to every newly diagnosed SMA family, within the US...

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

August 16, 2018

Updated 2018 SMA Standards of Care Statements Available Online

The 2018 SMA Standards of Care recommendations were published in Neuromuscular Disorders in February 2018 and March 2018 and are available online through Open Access for families and healthcare providers. These documents are updates of the Standard of Care document issued in 2007.

The 2018 recommendations emphasize that "a...

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Topics: Support & Care, Research, Front Page News

July 16, 2018

Summit of Strength Program Kicks Off in Cincinnati

Summit of Strength Program Kicks Off in Cincinnati

As a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support.

On Saturday, Cure SMA held its inaugural Summit of Strength in Cincinnati, OH. This is the first of 16...

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Topics: Support & Care, Events & Fundraising, Front Page News

July 11, 2018

Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years

Dr. John Kissel, Chair of Neurology at OSU Wexner Medical Center, Retires After 40 Years

Dr. John Kissel has treated patients with neuromuscular disorders from all over the United States. He specializes in spinal muscular atrophy and has been instrumental in his practice at one of the country's leading centers in neuromuscular medicine.

Dr. Kissel’s interest in SMA...

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Topics: Support & Care, Research, Front Page News

May 17, 2018

Spring 2018 Issue of Directions Now Available

Spring 2018 Issue of Directions Now Available

The Spring 2018 issue of Directions is now available online. Check out our Support & Care publications page to download past issues of Directions and Cure SMA's Care...

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

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