On August 3rd, as part of multiple days of advocacy visits, Cure SMA staff met with leaders from the Medicare division of the Centers for Medicare and Medicaid Services (CMS). The goal of the meeting was to advocate for robust reimbursement for Spinraza, as part of our ongoing coverage and payment policy project. While the
Centers for Medicare and Medicaid Services (CMS) Survey Read More »
Roche has opened enrollment in the US on one of their two Phase 2 clinical trials testing RO7034067 (also known as RG7916). Late last year, Roche first announced plans to begin these Phase 2 trials in response to favorable results from a Phase 1 study in healthy volunteers. RO7034067 is an orally available drug that
Roche Opens US Recruitment for Phase 2 Clinical Trial Read More »
On August 2nd, members of the spinal muscular atrophy community kicked off SMA Awareness Month by meeting with a dozen Senate and House congressional offices to advocate for issues that impact our community. The teams conducting these visits included families affected by SMA, and Cure SMA staff. These Senators and Representatives serve on committees important
SMA Families and Cure SMA Staff Visit Capitol Hill for Advocacy Efforts Read More »
The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue,
2017 SMA Researcher Meeting Summary: SMA Therapy Development Read More »
The Annual SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. This year we had a record setting 470 attendees. The goal of the meeting is to create open communication of early, unpublished data, accelerating the pace of research. The meeting also furthers research by building collaborations—including cross-disciplinary dialogue,
Cure SMA recently received a donation of 14 special tomato feeder seats and 80 large sheepskin blankets from the Bugenske family. The feeder seats were immediately sent out, and helped Cure SMA fulfill the requests of each family on the equipment waiting list. The donation of large sheepskin blankets helps fund a new support program,
Cure SMA Receives Donation from the Bugenske Family Read More »
Cure SMA is pleased to announce the creation of a new chapter in Arkansas! Led by co-chairpersons Kelly and Jason Alexander (family support), DeAnna and Sean Dillon (fundraising and communications), and Sylvia Wheeler (advocacy), the chapter is excited to begin helping families throughout their area, and fundraising to support research to find a cure for
Cure SMA Arkansas Chapter Announced Read More »
The SMA community officially recognizes August as Spinal Muscular Atrophy Awareness Month, an effort that Cure SMA has been coordinating since 1996. Throughout August, the community works together to raise the general public’s awareness of SMA by hosting candlelight vigils, contacting their local legislature, holding fundraisers, coordinating MLB awareness games, and providing information to local
August is SMA Awareness Month! Read More »
On Monday, Biogen released an update detailing our community’s progress in gaining access to Spinraza. The latest update shows that significant progress has been made in making Spinraza broadly available to those impacted by SMA. The update includes: 233 sites have begun the process for administering Spinraza, 145 of those sites now actively dosing. More
Biogen Releases Update on Spinraza Access Read More »
The summer 2017 issue of Compass is now available online. As part of our most recent round of funding, we’ve announced ten grants totaling $1.03 million for basic research. This issue of Compass introduces our grantees and gives a brief overview of their projects, including how the research will be conducted and what impact the
Summer 2017 Issue of Compass Now Available Read More »
