Bill Text: DE SCR41 | 2011-2012 | 146th General Assembly | Draft

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Bill Title: Recognizing The Fight Of Baby Avery Canahuati And The Growing Need To Raise Awareness About Spinal Muscular Atrophy In Delaware

Spectrum: Bipartisan Bill

Status: (Engrossed - Dead) 2012-05-17 - Passed in House by Voice Vote [SCR41 Detail]

Download: Delaware-2011-SCR41-Draft.html

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SPONSOR:	Sen. Cloutier & Sen. Bonini & Rep. B. Short
	Sens. Booth, Bunting, Connor, Ennis, Hall-Long, Katz, Lawson, Simpson, Sokola, Sorenson; Reps. Bolden, Brady, Briggs King, Hudson, J. Johnson, Kowalko, Miro, Mitchell, Osienski, Outten, Walker

DELAWARE STATE SENATE

146th GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 41

RECOGNIZING THE FIGHT OF BABY AVERY CANAHUATI AND THE GROWING NEED TO RAISE AWARENESS ABOUT SPINAL MUSCULAR ATROPHY IN DELAWARE

WHEREAS, Spinal Muscular Atrophy (SMA) has recently received national attention due to the passing of Avery Canahuati, the 5-month old ‘Bucket List' baby diagnosed with SMA; and

WHEREAS, SMA kills more infants and toddlers than any other genetic disease; and

WHEREAS, SMA is an inherited and often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing; and

WHEREAS, between one in 6,000 to one in 10,000 children are born with the disease; and

WHEREAS, SMA is generally believed to have affected 10,000 to 25,000 children and adults in the United States, and therefore is one of the most common rare diseases; and

WHEREAS, one in every 50 people carries the gene that causes SMA, which means there are approximately six million carriers in the United States alone; and

WHEREAS, the severity of SMA is highly variable and no cure is available at present; and

WHEREAS, research on SMA is incredibly underfunded; and

WHEREAS, the genetics of SMA provides a unique opportunity for therapeutic development; and

WHEREAS, it is important to raise awareness of this serious and often fatal disease.

NOW THEREFORE:

BE IT RESOLVED by the Senate of the 146^th General Assembly of the State of Delaware, the House concurring therein, that we recognize the fight of Baby Avery Canahuati and that there is a growing need to raise awareness about Spinal Muscular Atrophy (SMA) in the State of Delaware.

SYNOPSIS

This Resolution recognizes the fight of Baby Avery Canahuati and the growing need to raise awareness about Spinal Muscular Atrophy (SMA).

AUTHOR:Sen. Cloutier