Care SMA seeks to lead the way to a world without spinal muscular atrophy, the leading genetic cause of death for infants, by funding and directing comprehensive research that drives breakthroughs in treatment and care, and by providing families the support they need today.
To that end, the organization has issues an open call for applications for Implementation of its Newborn Screening for Spinal Muscular Atrophy program. Through the program, grants of up to $100,000 will be awarded in support of activities that enable states to pre-symptomatically identify and treat pediatric SMA patients through the implementation of newborn screening programs.
Possible funded activities include but are not limited to screening implementation support (including pilot screening, assay validation, additional personnel and staff training, equipment needed to perform the assay, and IT resources to perform the assay); and data gathering/patient follow-up and support (including collection of data on infants identified as SMA positive via NBS, including but not limited collaborations with Cure SMA, and appropriate personnel/resources to ensure adequate patient referral/counseling).
Funding may be proportional to state population and number of infants screened annually.
See the Cure SMA website for complete program guidelines and application instructions.