We’re excited to announce that enrollment for the NeuroNEXT biomarker study is now fully filled. This means that this critical study can continue to progress and teach us more about finding a cure for SMA. Cure SMA provided funding for this trial, and we also worked with lead investigator Stephen Kolb, MD, PhD, and his team […]
Spinal Muscular Atrophy Biomarker Study Reaches Enrollment Goals Read More »
The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) passed the House of Representatives this summer but still has not yet received a vote in the Senate. Cure SMA encourages you to call your Senators and urge them to support the passage of the Act prior to the end of the year. This legislation ensures
Cure SMA is expanding its role in spinal muscular atrophy medical affairs at the national level through its Medical Advisory Council (MAC). The MAC sets the agenda for proactive, creative, and collaborative leadership on issues that improve the quality of medical care for those affected by SMA. The focus of the Council is on educating
Applications for the Cure SMA Medical Advisory Board Due 10/1/14 Read More »
On September 5, we announced the close of our for request for proposals (RFP) for basic research. An RFP is an invitation for scientists to submit their best ideas for SMA research. They explain what they want to study, how they plan to study it, and why they think it will be effective for SMA. The
RFP Closes for Spinal Muscular Atrophy Basic Research Funding Read More »
Originally published on August 12, 2014. The SMA research group meeting, held each year as part of our Annual SMA Conference, is an anticipated event in the SMA research community. This meeting has a tangible impact on achieving our mission of a world without SMA. Over the last decade, we’ve seen many advances in SMA
Originally published on June 27, 2014. The 2014 SMA Conference brought together over 1,400 families and 250 researchers from around the world. At the conclusion of the conference, families gathered for a special opportunity to hear about the latest SMA research from the leading experts. The session addressed new advances, strategies, and challenges in SMA
Recently, we announced that Dr. Lyndsay Murray at The University of Edinburgh will receive a a Cure SMA basic research grant of $80,000 over two years, to explore the reasons causing motor neuron cell death in SMA. Motor neurons are nerve cells in the brain stem and spinal cord that control muscle movement. We know
Cure SMA Announces Basic Research Funding for Dr. Lyndsay Murray Read More »
Cure SMA and Parent Project Muscular Dystrophy (PPMD) are conducting two different surveys about clinical trial participation. The goal is to find out more about how the neuromuscular community—individuals and families affected by conditions like spinal muscular atrophy or muscular dystrophy—thinks about potential therapeutics and clinical trials. All parents of children with SMA who live
At the end of last week, we announced the close of our for request for proposals (RFP) for clinical care research. A clinical care RFP is an invitation for scientists to submit their best ideas for projects that address the clinical, psychological or social aspects of SMA. They explain what they want to study, how
Funding Process Reaches Next Steps for Spinal Muscular Atrophy Clinical Care Research Read More »
Did you catch Cure SMA on Top Chef last week? Chef Takashi Yagihashi competed on behalf of Cure SMA for Bravo’s Top Chef Duels series. What a great opportunity to raise awareness of SMA, right on the heels of SMA Awareness Month! Chef Takashi and his family have been involved with Cure SMA for several
Chef Takashi Competes for Cure SMA Read More »
