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House Proceeding 12-08-09 on Dec 8th, 2009 :: 1:36:45 to 1:41:35
Total video length: 2 hours 43 minutes Stream Tools: Stream Overview | Edit Time

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Edward R. Royce

1:36:41 to 1:37:02( Edit History Discussion )

Edward R. Royce: to vote for him -- this resolution. at this time i gentleman from california. mr. royce: i gentleman for yielding. mr. speaker, i r of house resolution 55 authored by myself and my colleague from the state of california,

Edward R. Royce

1:36:45 to 1:41:35( Edit History Discussion )
Speech By: Edward R. Royce

Edward R. Royce

1:37:03 to 1:37:24( Edit History Discussion )

Edward R. Royce: congresswoman jane harman. this resolution calls for the establishment of a national prader-willi syndrome awareness month and it encourages continued federal research of this syndrome. this syndrome is recognized as a common genetic cause of childhood

Edward R. Royce

1:37:25 to 1:37:46( Edit History Discussion )

Edward R. Royce: and for too many children it is them not even to be able to reach their teens. many of them don't reach their 20th bivert day a result of this malady. 7 1/2 years ago i was in the position of most members of this house and most americans in that i had never heard of

Edward R. Royce

1:37:47 to 1:38:07( Edit History Discussion )

Edward R. Royce: pradder willie syndrome -prader-willi syndrome. then a little girl named abby porter was born. i can still remember that day and the phone call that came telling me that abby had arrived but something was wrong. abby was sleeping almost 24 hours a day. was unable to eat on her and had almost at all.

Edward R. Royce

1:38:08 to 1:38:28( Edit History Discussion )

Edward R. Royce: thanks to the persistence and strong will of abby's parents, she was sent to children's hospital in denver where she underwent extensive testing. and at two weeks of age we all learned that abby had a genetic syndrome. many of of you are now asking what i asked on that day of the

Edward R. Royce

1:38:29 to 1:38:52( Edit History Discussion )

Edward R. Royce: phone call, what is prader-willi syndrome? in short, it is a complex condition, morbid obesity, by insatiable appetite, by poor muscle tone and failure to thrive during infancy among many other maladies. and 20 years ago a child with prader-willi syndrome was

Edward R. Royce

1:38:53 to 1:39:13( Edit History Discussion )

Edward R. Royce: likely to die of morbid obesity before they reached adulthood. most of these children were either never diagnosed or diagnosed later in life when treatment was far less effective. abby porter is actually one of the lucky ones as she received a very early diagnosi diagnosis, she was able to

Edward R. Royce

1:39:14 to 1:39:34( Edit History Discussion )

Edward R. Royce: begin human growth hormone treatments at the age of three months. a relatively new treatment for prader-willi at the time of her her to begin building the muscle tone she needed to hold up her head, sit up, crawl, and finally to walk. as a result, she was able to reach all of her developmental milestones at roughly the

Edward R. Royce

1:39:35 to 1:39:55( Edit History Discussion )

Edward R. Royce: appropriate times. she was also able to develop cognitively at a more normal rate than they she would have without this treatment. abby and i want every child with prader-willi syndrome to have this same opportunity. we want to increase awareness of this genetic disorder among health care providers and pea trishans and parents and

Edward R. Royce

1:39:56 to 1:40:16( Edit History Discussion )

Edward R. Royce: teachers and communities. we want children to get diagnosed early so that they can begin immediate treatment. we want parents to find out the inform they need to make decisions about the treatment and development of their children. we want teachers to the cognitive and emotional struggles that come with

Edward R. Royce

1:40:17 to 1:40:39( Edit History Discussion )

Edward R. Royce: prader-willi and must be dealt with in order for these children to learn. we want neighbors and community members to learn about this syndrome so that they will understand the actions behavior of some of the children with pradder willie. thus, they will not reject them outright and will instead teach their own children about the acceptance of differences.

Edward R. Royce

1:40:40 to 1:41:01( Edit History Discussion )

Edward R. Royce: abby and i wa these families with prader-willi children to know that the milies are not alone in this fight to search for will improve the future of their children. and for that reason we are both proud today to see this house call for a national prader-willi syndrome awareness month and to express support for further research in this disorder.

Edward R. Royce

1:41:02 to 1:41:23( Edit History Discussion )

Edward R. Royce: i want to again thank my colleague, congre harman, from california for her support and efforts on behalf of this resolution. i urge all of my colleagues to support this bill. i reserve the balance of my time. the speaker pro tempore: the gentleman reserves the balance of his time. the gentlewoman from california. mrs. cap yield whatever time she may consume to my colleague and

Edward R. Royce

1:41:24 to 1:41:35( Edit History Discussion )

Edward R. Royce: friend from california, jane harman. the speaker gentlewoman from california is recognized. ms. harman: than speaker. let me first commend mrs. capps who as a registered nurs

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