Because of Families of SMA s grassroots lobbying efforts, Congressman Porter has agreed to include language in his report accompanying his appropriations bill for the second year in a row. The Committee is encouraged by the recent breakthrough in understanding the role that is played by the SMA protein in normal motor neurons. The Committee also encourages the Institute to explore areas of promising research identified in the 1999 Families of SMA International workshop. Report language grabs the attention of the policy makers at NIH because they know that a Member of Congress who holds their purse strings cares deeply about an issue. The language also is an opportunity to highlight the significant amount of work that Families of SMA does on behalf of the research community.
Individuals do make a difference in shaping federal policy.
Federal report language is great achievement for which Families of SMA should be proud. See Testimony offered before Congressional Committee , April 1999 See NIH Request for Applications, March 2000 - a result of this effort.