Cure SMA works for a world without spinal muscular atrophy, the number-one genetic cause of death for infants, and funds and directs research that drives breakthroughs in treatment and care and provides individuals with SMA and their families the support they need.
To that end, the organization invites applications for funding to Implement Newborn Screening for Spinal Muscular Atrophy.
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. Through this funding, Cure SMA intends to facilitate the ability of state laboratories to implement and conduct newborn screening for SMA.
Possible funded activities include but are not limited to:
Screening Implementation Support — Such as pilot screening, assay validation, additional personnel and staff training, equipment needed to perform the assay, and IT resources to perform the assay.
Data Gathering/Patient Follow-up and Support — Such as collection of data on infants identified as SMA positive via NBS, including but not limited to collaborations with Cure SMA and appropriate personnel/resources needed to ensure adequate patient referral/counseling.
See the Cure SMA website for complete program guidelines and application instructions.