Families of SMA Launches New Program to Fund Care Research to Drive Improvements in Patient Care in Spinal Muscular Atrophy

Elk Grove Village, IL, March 21, 2013 --(PR.com)-- This funding will build on the consensus statement for the standard of care for SMA with data driven results on specific areas of SMA care such as respiratory, nutritional, and surgical interventions. These results will be used to provide:

-Educational programs for professional medical providers, such as the FSMA CME day;
-New family-focused care publications, such as the FSMA Care Series Booklets; and
-Peer reviewed journal publications to influence insurance coverage.

Families of SMA is pleased to announce that we are accepting grant applications for 2013 funding of clinical care research projects, under a competitive review by our Medical Advisory Council (MAC). We anticipate granting awards for three SMA pilot projects in this funding round for $50,000 each. The results of which will build an evidence base and demonstrate measurable, positive effects on the clinical management and lives of patients with SMA. This initial round of funding is designed to fund pilot studies which will demonstrate the feasibility of data collection, and which will then support submission of a larger study for FSMA or government funding.

This new funding program complements the three established FSMA research funding programs for basic research, translational drug discovery, and clinical trials to provide a comprehensive approach to developing a treatment and cure for SMA and improving care for all SMA patients:

1) Basic Research Funding to generate new ideas and approaches to treat or cure SMA.
2) Translational Drug Discovery Funding to turn ideas into practical, safe and effective therapies.
3) Clinical Trials Funding to establish resources and tools to test new drugs in humans.
4) Clinical Care Funding to drive improvements in patient care.

FSMA envisions that studies funded by this program will fall into the following key areas:

-Respiratory interventions and breathing issues.
-Nutritional interventions and impact of diet.
-Spinal deformity and surgical interventions.
-Psychological interventions to address mental health issues facing SMA patients and care givers, quality of life and the impact of the disease on the family.
-Studies to evaluate the impact of standing.
-Studies to evaluate the impact of medical devices.
-Studies that address the gaps in the delivery of care.

All applications are reviewed by the FSMA Medical Advisory Council (MAC), using a NIH-like scoring system based on both scientific quality and relevance to the Families of SMA research mission of improving care for all SMA patients. Proposals will be accepted from independent investigators at public or private institutions, for-profit or nonprofit organizations.