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 27, 2018

Community Spotlight: Adrienne Vollmer

Community Spotlight: Adrienne Vollmer

In May, Governor Eric Holcomb held a signing ceremony for Indiana House Bill 1017, adopting newborn screening for SMA and SCID. Dubbed “Graham’s Bill” in honor of Graham Vollmer, the bill was largely advanced by the efforts of...

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Topics: Community & Awareness, Advocacy, 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 24, 2018

Community Spotlight: Allyson Henkel

Community Spotlight: Allyson Henkel

My son Pete and I began advocating to have SMA added to the newborn screening panel in Pennsylvania in December of 2017. Pete was 13-years old, type II SMA. He realized the impact that early diagnosis and treatment was having on SMA babies and thought he could make a difference. He has. Here...

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Topics: Community & Awareness, Advocacy, Front Page 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

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 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

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