Bill Text: NJ AJR173 | 2016-2017 | Regular Session | Introduced
Bill Title: Designates July 20 of each year as "Emma's Day" to raise awareness of lysosomal storage disorders.
Spectrum: Partisan Bill (Republican 1-0)
Status: (Introduced - Dead) 2017-11-30 - Introduced, Referred to Assembly Health and Senior Services Committee [AJR173 Detail]
Download: New_Jersey-2016-AJR173-Introduced.html
No. 173
STATE OF NEW JERSEY
217th LEGISLATURE
INTRODUCED NOVEMBER 30, 2017
Sponsored by:
Assemblywoman NANCY F. MUNOZ
District 21 (Morris, Somerset and Union)
SYNOPSIS
Designates July 20 of each year as "Emma's Day" to raise awareness of lysosomal storage disorders.
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating July 20 of each year as "Emma's Day" to raise awareness of lysosomal storage disorders.
Whereas, Lysomes are minute bodies within cells that convert lipids, sugars, and proteins into smaller components to provide energy for the body, and lysosomal storage disorders result from material accumulating within cells; and
Whereas, There are more than 40 types of lysosomal storage disorders, including Krabbe disease, Tay-Sachs disease, Gaucher disease, and Pompe disease; and
Whereas, Lysosomal storage disorders are rare, inherited, and primarily affect children; and
Whereas, Many children with lysosomal storage disorders die within a few months or years of birth, after suffering from symptoms which include (depending on the particular disorder) developmental delays, movement disorders, seizures, dementia, deafness, blindness, enlarged livers or spleens, bones that grow abnormally, and pulmonary and cardiac problems; and
Whereas, Emma Daniels, was born in New Jersey in 2009 and diagnosed with Krabbe disease, a lysosomal storage disorder which most often affects infants before six months of age, and for which no cure yet exists; and
Whereas, Research is underway to find reliable cures and treatments for lysosomal storage disorders, and it is appropriate to raise awareness of these disorders and of the need for newborn screening and effective treatments; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. July 20 of each year is designated as "Emma's Day" in the State of New Jersey.
2. The Department of Health and all other public and private entities entrusted with the health of the citizens of this State are urged to observe this day with appropriate activities to increase public awareness of lysosomal storage disorders.
3. This joint resolution shall take effect immediately.
STATEMENT
This joint resolution designates July 20 of each year as "Emma's Day" in the State of New Jersey in order to raise awareness of lysosomal storage disorders and acknowledge the importance of newborn screening in diagnosing these disorders. Emma Daniels was born in New Jersey in 2009 and diagnosed with Krabbe disease, a lysosomal storage disorder.
Lysosomal storage disorders are inherited, and affect primarily children, many of whom die within a few months or years of birth after much suffering. There are more than 40 of these disorders, including Krabbe disease, Tay-Sachs disease, Gaucher disease, and Pompe disease. Currently no cure or reliable treatments exist.
This joint resolution urges the Department of Health and all other public and private entities entrusted with the health of the citizens of this State to observe "Emma's Day" with appropriate activities to increase public awareness of lysosomal storage disorders.
