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

August 21, 2018

Community Spotlight: Doug McCullough

Community Spotlight: Doug McCullough

In 2014, Doug McCullough gave a TEDx talk at a Johnson & Johnson event in New Jersey that focused on disability inclusion in the workplace. His speech, A Billion People in the Shadows, represents the 1 Billion...

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Topics: Community & Awareness, Front Page News

August 21, 2018

Cure SMA Concert for a Cure Reaches $2 Million Milestone

Cure SMA Concert for a Cure Reaches $2 Million Milestone

The 2018 Cure SMA Concert for a Cure raised $210,000 on April 21, 2018. After combining many years of fundraising and hard work, the 18th Annual Concert for a Cure reached a very exciting milestone of $2 Million.

“We are still in awe of the dedication, support and commitment that...

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Topics: Community & Awareness, Events & Fundraising, Front Page News

August 21, 2018

Community Spotlight: Victoria Colone

Community Spotlight: Victoria Colone

In this Community Spotlight, Victoria Colone delves into the complexities of early diagnosis and treatment as a mom navigating the world of healthcare for her child with SMA. 

Victoria Colone was 22 weeks pregnant when she learned through an amniocentesis test that her son, Jaxon,...

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Topics: Community & Awareness, Front Page News

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