For the past five years, the Cure SMA Community Update Survey has collected data and information on the SMA community’s experiences and daily challenges. Every individual brings a unique perspective that, collectively, helps us drive further progress and adapt to the changing landscape of SMA.
Our top priority is to represent the patient voice from the whole community so we can drive research and care to meet patient needs. Completing this survey is one tangible, and relatively simple, way for you to make your voice heard. Every piece of data collected allows us to track changes in the attitudes, feelings, and actions of the SMA community over time. Data from the survey informs Cure SMA’s advocacy agenda and has been featured in state fact sheets, legislative support statements, and educational outreach to federal and state leaders to showcase the priorities and needs of the SMA community related to newborn screening, employment, transportation, community living, and healthcare.