Advocacy
Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA
Registration is now open for the SMA Patient-Focused Drug Development (PFDD) meeting with the FDA. The PFDD meeting will be held at the College Park […]
Updated SMA Drug Pipeline Released as First Commercial Patient Receives Spinraza
With the news today that the first-ever patient has received the first commercial Spinraza dose, we are releasing an updated version of our SMA drug […]
SMA Patient-Focused Drug Development Meeting with FDA Set for April 18, 2017
Tuesday, April 18, 2017, has been announced as the date for the SMA Patient-Focused Drug Development Meeting with the FDA. At the Patient Focused Drug […]
Join Us for an Upcoming Webcast about SPINRAZA TM (nusinersen)
Please join Cure SMA, MDA and representatives from Biogen to learn more about SPINRAZA™ (nusinersen). As you know, SPINRAZA recently received FDA approval in the […]
FDA Approves Spinraza for SMA
On December 23, the FDA announced that it has approved SpinrazaTM (nusinersen) to treat spinal muscular atrophy, making it the first-ever FDA-approved therapy for SMA. […]
Cure SMA Participates in a Special FDA Listening Session
Last week, Cure SMA participated in a listening session with FDA Commissioner Robert M. Califf, MD, MACC. The FDA organized the listening session in order […]
SMA Community Conducts Outreach Visits with Members of Congress
On November 30, members of the SMA community met with 17 different legislative offices— eight from the Senate and nine from the House of Representatives. […]
Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage
On Tuesday, November 29, more than 160 people from the SMA community – including government and industry partners – gathered for the 6th Annual “Hope […]
Help Us Shape the Future Together, and Reach our Goal of $750,000
This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug […]
Cure SMA Launches Insurance Coverage and Payment Policy Project
Earlier this year, Cure SMA initiated an insurance coverage and payment policy project, in partnership with District Policy Group. The goal of this project is […]