OLR Bill Analysis

HB 6100 (as amended by House "A")*

AN ACT DESIGNATING SPINAL MUSCULAR ATROPHY WITH RESPIRATORY DISTRESS AWARENESS DAY.

SUMMARY:

This bill requires the governor to proclaim February 10 of each year as Spinal Muscular Atrophy with Respiratory Distress (SMARD) Awareness Day to heighten awareness about SMARD's symptoms and available treatments. It requires that suitable exercises be held in the State Capitol and elsewhere as the governor designates.

The bill also requires the governor to proclaim the month of October of each year as Dwarfism Awareness Month to heighten awareness about dwarfism's symptoms and available treatments. It authorizes suitable exercises to be held in the State Capitol and elsewhere as he designates.

*House Amendment “A” adds the provision on Dwarfism Awareness Month.

EFFECTIVE DATE: Upon passage

BACKGROUND

SMARD

SMARD is a rare motor neuron disorder that is referred to as an “orphan disease” because there are so few reported cases. It undermines voluntary muscle function and usually manifests itself during infancy. One of its main symptoms is respiratory failure due to diaphragmatic paralysis.

COMMITTEE ACTION

Government Administration and Elections Committee

Joint Favorable

Yea

15

Nay

0

(03/18/2015)