The following language on SMA has been approved by the House Appropriations Committee as part of the Report on the FY07 House Labor, Health and Human Services and Education Appropriations.

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE

Spinal muscular atrophy (SMA)-SMA is the leading genetic killer of infants and toddlers.  The Committee understands that the severity of the disease, its relatively high incidence, and the possibility of imminent treatments have led NINDS to execute the SMA Therapeutics Development Program.  The Committee commends NINDS for this initiative and encourages NINDS to continue the project mission of identifying and completing preclinical research and development of drug candidate therapeutics for SMA in the coming year.  More importantly, the Committee encourages NINDS to begin planning and budgeting for the necessary next stages of drug development.  The Committee requests that NINDS provide a progress report on all aspects of SMA research by April 30, 2007.

NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

Spinal muscular atrophy (SMA).-SMA is the leading genetic killer of infants and toddlers, and is the most prevalent genetic motor neuron disease. The severity of the disease, its relatively high incidence, and the possibility of imminent treatments led NINDS to initiate the innovative SMA Project. The Committee encourages NICHD to continue to formulate a plan for expanding its work and funding for SMA research. Specifically, the Committee encourages NICHD to coordinate funding with NINDS to ensure increased participation of investigators in SMA and developmental neurobiology relevant to SMA. Further, the Committee encourages NICHD to take the lead on developing a cross-institute working group comprised of NICHD, NINDS and NIGMS to study broader questions of care and the role of exercise and nutrition on SMA and other neuromuscular disease.

NIH OFFICE OF THE DIRECTOR

Spinal muscular atrophy(SMA).-The Committee encourages the Director to ensure the success of the SMA project by providing active and ongoing support from the OD as well as from other related institutes. The Committee is aware that the current SMA Project is scheduled to conclude in 2007 and encourages the Director to begin planning for the necessary follow-on effort to maximize the results of this innovative project for SMA and to ensure it serves as a model for other diseases.