News
May 14, 2019
Cure SMA Publishes Journal Article on Benefit-Risk Preferences in SMA
Your voice has been heard!
Cure SMA has published a paper, titled, Evaluating Benefit-Risk Decision-Making in Spinal Muscular Atrophy: A First-Ever Study to Assess Risk Tolerance in the SMA Patient Community in the Journal of...
Topics: Support & Care, Research, Front Page News
May 13, 2019
Spring 2019 SMA Newborn Screening Update
We are thrilled to announce that Missouri, Pennsylvania and Vermont have now implemented permanent statewide SMA newborn screening, making 6 states that are now permanently screening statewide for SMA. Several other states have adopted SMA newborn screening and have moved one step closer to...
Topics: Our Impact, Advocacy, Front Page News
May 9, 2019
Team Cure SMA to Participate in Vermont City Marathon
On Sunday, May 26th, Regina Philipps will participate in the Vermont City Marathon and has already raised over $13,000 for Team Cure SMA while training.
As an avid runner, Regina joined...
Topics: Community & Awareness, Events & Fundraising, Front Page News
May 8, 2019
Dr. Arthur Burghes Named 2019 Distinguished Scholar
The Ohio State University recently announced the 2019 honorees of the Distinguished Scholar Award. The award, established in 1978, recognizes exceptional scholarly accomplishments by senior professors...
Topics: Research, Front Page News
May 8, 2019
Scholar Rock Issues Community Statement on the Initiation of a New Clinical Trial for SRK-015
The below statement is a community update from Scholar Rock on SRK-015.
Dear SMA Community,
Scholar Rock is dedicated to developing novel medicines to improve the lives of individuals who have Spinal Muscular Atrophy (SMA). We want to thank the SMA community for your...
Topics: Clinical Trials, Research, Front Page News
May 7, 2019
Genentech Presents Data from the Risdiplam Pivotal FIREFISH and SUNFISH Studies in Spinal Muscular Atrophy at the AAN Annual Meeting
Genentech, a member of the Roche Group, recently announced new data at the 71st American Academy of Neurology (AAN) Annual Meeting from the dose-finding Part 1 of the pivotal...
Topics: Clinical Trials, Research, Front Page News
May 6, 2019
AveXis Presents Data at AAN Annual Meeting Demonstrating Efficacy of Zolgensma in Broad Spectrum of Spinal Muscular Atrophy (SMA) Patients
AveXis, a Novartis company, recently announced interim data from ongoing trials of the investigational product...
Topics: Clinical Trials, Research, Front Page News
May 6, 2019
Biogen Presents Data Affirming Longer-Term Safety and Durability of Treatment with SPINRAZA® at AAN Annual Meeting
Biogen today announced new data affirming the safety and durability of SPINRAZA (nusinersen) and highlighting its clinically meaningful benefits for...
Topics: Clinical Trials, Research, Front Page News
May 2, 2019
Cure SMA and Genentech Partner to Provide Travel Support to Adults with SMA the Annual SMA Conference
Cure SMA is thrilled to announce that we will be extending travel scholarship opportunities to adults with SMA (18 and over) who are attending the 2019 Annual SMA Conference, taking place June 28-July 1, 2019 at Disneyland Resort in Anaheim, CA.
Thanks to a generous grant funded by...
Topics: Support & Care, Conference, Front Page News
May 1, 2019
Biogen to Present Data at AAN Highlighting Spinraza and Emerging Biomarkers for SMA
Biogen today announced it will present new data focusing on SMA at the 71st annual meeting of the American Academy of Neurology (AAN) in Philadelphia, PA.,...
Topics: Clinical Trials, Research, Front Page News
CureSMA
@CureSMA
CureSMA
