Robert Weygand: “while I am in support of H.R. 4365, the Child Health Research and Prevention Amendments, this bill should not be on the…”

“while I am in support of H.R. 4365, the Child Health Research and Prevention Amendments, this bill should not be on the floor today under the suspension of the rules--where no member can offer an amendment to strengthen and improve this bill. I commend those of my colleagues who drafted this bill in the back rooms of Congress. They have drafted a good piece of legislation. But Congress works best when more than a minority of the members are involved in developing legislation. As a cosponsor of H.R. 3301, the base bill for this new draft legislation, I will vote in favor of the bill on the floor today. Make no mistake, however, that thousands of extremely ill children are being ignored by the House of Representatives today. Well over a month ago, my staff contacted the Commerce Committee-- both the majority and the minority--asking if this bill could also direct the NIH to review their work on children with the rare illness "Hutchinson-Gilford Progeria Syndrome," similar to the study being asked for in the bill regarding Friedreich's ataxia. Other members of the House worked with me on this effort. I also joined with a member of the Majority to inquire if we could similarly add Spinal Muscular Atrophy to the same section of the bill. These measures are not in the bill today, and this process--which bars amendments--has kept these children and thousands of others from being heard, and helped by this bill.”