On July 21, 2010, the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) heard testimony from panelists discussing Rare and Neglected Pediatric Diseases. One of these diseases was spinal muscular atrophy (SMA).

Two of the panelists were Dr. Alan Guttmacher and Mr. John F. Crowley.

Dr. Guttmacher, who is the Acting Director at the National Institute of Child Health and Human Development (NICHD), spoke on the importance of SMA and SMA research to NIH and its officials.

Mr. Crowley, CEO and Chairman of Amicus Therapeutics, spoke about patient advocacy, and the admirable work and advocacy that FightSMA has exhibited over the years.

Click here to read the transcript of Dr. Guttmacher’s testimony and here for the transcript of Mr. Crowley’s testimony. For more information about the hearing, including the testimony of other panelists and video of the hearing, click here.