Cure SMA International Resources

Welcome and thank you for reaching out to Cure SMA! The diagnosis of SMA can be confusing, scary, frustrating...pretty much the whole gamut of emotions. But you are not alone. You are now part of Cure SMA, a network of individuals with SMA, families, researchers, clinicians, and other health professionals who are determined to make a difference. ...

Participate in Annual Cure SMA Community Update Survey – Open Now!

Last year presented the us with unique challenges, some we are still managing today. However, it has also reinforced the importance of understanding what the SMA community is thinking, feeling, and experiencing in their day-to-day. Knowing our community’s needs allows us to better serve you—whether it be advocating for comprehensive research, educating regulators, payers, and industry partners to improve care, ...

Cure SMA Funds Over $9 Million in New and Ongoing Research in FY20

During our past fiscal year—from July 1, 2019 to June 30, 2020—Cure SMA funded more than $9 million in new and ongoing research and care initiatives. This money will be used strategically to help accelerate research and ensure we are developing treatments and protocols for all types, ages, and stages of spinal muscular atrophy (SMA). The areas funded include: Basic ...

Cure SMA to Meet with FDA for Critical Path Innovation Meeting

We are excited to share with the SMA community that the U.S. Food and Drug Administration (FDA) has granted Cure SMA a Critical Path Innovation Meeting (CPIM). This means that key leaders at the FDA will have the opportunity to communicate with clinical investigators, members of academia, industry, scientific groups, and patients to improve efficiency and success in the next ...

Annual Cure SMA Community Update Survey Ready for Your Input

Navigating the recent global health crisis, Coronavirus (COVID-19), has reinforced for us the importance of understanding what the SMA community is thinking, feeling, and experiencing. This allows us to more effectively support those impacted by SMA, both with the everyday needs you have and during greater public health challenges. Without this knowledge, we cannot advocate for more comprehensive research and ...

Biogen Issues Q4 2019 Community Statement on Spinraza

Dear Members of the SMA Community, As part of Biogen’s ongoing commitment to individuals living with, and caregivers affected by, spinal muscular atrophy (SMA), we are pleased to announce updates to our SPINRAZA® (nusinersen) clinical development program – an extensive clinical data set in the treatment of SMA to date that includes more than 300 patients, treated for up to ...

Cure SMA Establishes an Adult Advisory Council

We are happy to announce the establishment of the Adult Advisory Council. The Adult Advisory Council is a volunteer council that provides guidance, advice, and feedback to Cure SMA in relation to several topics. These topics include support programs, patient care, engagement, independence, advocacy, accessibility, education, transitioning to adulthood, and much more. Members of the council will draw upon their ...

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