| Appropriations Report Language |
Families of SMA has worked collaboratively with the SMA community to secure language in the congressional committee report that accompanies the annual appropriations bill providing funding for the Departments of Labor, Health and Human Services, and Education. This language encourages the National Institutes of Health to continue and expand their work relative to research on a treatment or cure for SMA. Please find below the report language included in the fiscal year (FY) 2008 Labor, Health & Human Services, and Education Appropriations bill: National Institute of Neurological Disorders and Stroke Spinal Muscular Atrophy [SMA]- The Committee commends the NINDS for the advancement of the SMA Therapeutics Development program and strongly urges the Institute to continue identifying and completing preclinical research and development of SMA drug candidates. The Committee urges the NINDS to plan and budget for the successive stages of the project, including, most importantly, funding for clinical trials and infrastructure (e.g., site support, patient registries, biomarker development and natural history studies). Lastly, the Committee notes the need to expand basic research funding on SMA and requests that a request for applications be issued. National Institute of Child Health and Human Development Spinal Muscular Atrophy [SMA]- The Committee has stated in previous years that improving the diagnosis of SMA and accelerating the development of treatments for this disease is consistent with the NICHD's mission. However, the Committee is concerned that the NICHD has dedicated only minimal resources specifically to initiate work and sustain ongoing resources for SMA. The Committee again urges the NICHD to fund specific basic, translational and clinical research initiatives on SMA. Further, the Committee urges the NICHD to coordinate its efforts with the NINDS and NIGMS. National Institutes of Health, Office of the Director Spinal Muscular Atrophy [SMA]- The Committee strongly urges the OD to ensure the success of the SMA Project at the NINDS by providing active and ongoing support from the OD as well as from other related Institutes. The current SMA Project is scheduled to reach its near-term milestones in 2007 and thus it is imperative that the NIH begin planning and budgeting for the necessary successive stages of the project, including funding for clinical trials and the infrastructure that will be needed to support of each of the stages of drug development.
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