News

September 17, 2018

Community Spotlight: The Lasko Family

Community Spotlight: The Lasko Family

After Max began receiving Spinraza in 2017, we wanted to do our part to help ensure that children born with SMA would be diagnosed as early as possible. Inspired by many others in the SMA community, we decided to pay a visit to our state senator's office in Annapolis...

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Topics: Community & Awareness, Advocacy, 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

September 12, 2018

SMA Newborn Screening Advancements

SMA Newborn Screening Advancements

The first FDA approval of a therapy for SMA has created an opportunity for our community to move forward on another of our long-term priorities: newborn screening. SMA is the leading genetic cause of death for infants, but we have an historic opportunity to change that through newborn...

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Topics: Our Impact, Advocacy, Front Page News

September 5, 2018

New York to Implement Newborn Screening for SMA October 1st

New York to Implement Newborn Screening for SMA October 1st

New York State will screen every child for SMA beginning October 1, according to the New York State Department of Health. New York joins Missouri, Utah, Minnesota, Indiana and Illinois as states that have adopted permanent screening for SMA.

Since 2016, New York has been screening for...

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Topics: Our Impact, Advocacy, 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 28, 2018

Cure SMA Provides Funding for "Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)" Published in Neurology

Cure SMA Provides Funding for

In a recent paper titled, “Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA)” Dr. Chad Heatwole and others describe a cross-sectional study of 359 adults with SMA using the International SMA Patient Registry. The goal of the study was to determine the...

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Topics: Our Impact, Research, Front Page News

August 27, 2018

Community Spotlight: The Anton Jensen Family

Community Spotlight: The Anton Jensen Family

Quinn Anton Jensen was diagnosed with spinal muscular atrophy (SMA) type II on March 2007 in Iowa City. Quinn’s mom, Nancy, recalls the genetic testing process took over a month. It was a stressful and frightening time and the Anton Jensens wish the diagnosis process was faster. Nancy...

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Topics: Community & Awareness, Front Page News

August 24, 2018

Community Spotlight: The Nelson Family

Community Spotlight: The Nelson Family

Mary was 4 months old when her parents, Ryan and Kate Nelson, suspected something wasn’t quite right with their daughter; she wasn’t bearing weight on her legs nor was she lifting her head like their friends’ babies. Mary’s pediatrician referred them to a neurologist...

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Topics: Community & Awareness, Front Page News

August 23, 2018

Community Spotlight: The Zmaczynski Family

Community Spotlight: The Zmaczynski Family

At 7 months old, Sarah Zmaczynski’s parents, Jill and John, noticed their daughter couldn’t bear weight on her legs. Sarah’s pediatrician responded with the “kids develop at different rates” speech. As...

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Topics: Community & Awareness, Front Page News

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