News
October 5, 2018
Cytokinetics and Astellas Provide Clinical Trial Updates for Reldesemtiv in SMA
Cytokinetics, Incorporated and Astellas Pharma Inc. today provided an update for their collaborative skeletal muscle program, including clinical trial updates for reldesemtiv in SMA.
In June, Cytokinetics announced data from a Phase...
Topics: Clinical Trials, Research, Front Page News
October 3, 2018
Genentech Announces New Data for Risdiplam in Spinal Muscular Atrophy (SMA) at the World Muscle Society Congress
Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), announced today interim clinical data from the dose-finding parts of the pivotal FIREFISH and...
Topics: Clinical Trials, Research, Front Page News
October 3, 2018
Genentech Releases Community Statement on Risdiplam
The following statement is a community update from Genentech/Roche on the risdiplam studies FIREFISH and SUNFISH.
Dear SMA community,
We are happy to share an update on our FIREFISH and SUNFISH studies of risdiplam. We would also like to acknowledge the tremendous support...
Topics: Clinical Trials, Research, Front Page News
September 27, 2018
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...
Topics: Community & Awareness, Advocacy, Front Page News
September 26, 2018
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...
Topics: Community & Awareness, Support & Care, Front Page News
September 24, 2018
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...
Topics: Community & Awareness, Advocacy, Front Page News
September 17, 2018
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...
Topics: Community & Awareness, Advocacy, Front Page News
September 12, 2018
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...
Topics: Support & Care, Advocacy, Research, Front Page News
September 12, 2018
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...
Topics: Our Impact, Advocacy, Front Page News
September 5, 2018
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...
Topics: Our Impact, Advocacy, Front Page News
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