Bill Text: NJ SJR131 | 2020-2021 | Regular Session | Introduced
Bill Title: Designates October 23 of each year as "Aromatic L-amino Acid Decarboxylase Deficiency Awareness Day."
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2021-11-12 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [SJR131 Detail]
Download: New_Jersey-2020-SJR131-Introduced.html
Sponsored by:
Senator SHIRLEY K. TURNER
District 15 (Hunterdon and Mercer)
SYNOPSIS
Designates October 23 of each year as "Aromatic L-amino Acid Decarboxylase Deficiency Awareness Day".
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating October 23 of each year as "Aromatic L-amino Acid Decarboxylase Deficiency Awareness Day".
Whereas, The State of New Jersey supports protecting the health of young children and vulnerable populations, as well as educating the public and medical communities about rare diseases; and
Whereas, A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time; and
Whereas, Aromatic L-Amino Acid Decarboxylase ("AADC") Deficiency is a life-limiting, severely debilitating genetic neurologic rare disease that significantly impacts a patient's development, motor skills, growth, cognition, and language skills; and
Whereas, AADC Deficiency results from an inherited genetic condition where patients lack the AADC enzyme that is required to create dopamine; and
Whereas, Without dopamine, patients may never achieve motor-skills milestones like holding their heads up, sitting, or standing, nor will the patient develop the ability to communicate or perform the most basic life needs; and
Whereas, Although some patients who are born with AADC Deficiency may be asymptomatic at birth, AADC patients typically experience symptoms within the first year of life such as developmental delay and involuntary eye movements; and
Whereas, A patient suspected of having AADC Deficiency is diagnosed with the disease through genetic and other biochemical tests; and
Whereas, AADC Deficiency affects approximately 1 in 100,000 people in the United States; and
Whereas, Caregivers of patients with AADC Deficiency are often responsible for the overall care of the patient due to the debilitating nature of this disease and patients may need life-long care; and
Whereas, The State of New Jersey can raise awareness of AADC Deficiency in the public and medical communities within this State in order to assist individuals suffering from AADC and their caregivers; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. October 23 of each year is designated as "Aromatic L-amino Acid Decarboxylase Deficiency Awareness Day" in New Jersey.
2. The Governor is respectfully requested to annually issue a proclamation and call upon public officials, private organizations, and all citizens of this State to observe "Aromatic L-amino Acid Decarboxylase Deficiency Awareness Day" with appropriate awareness activities and programs.
3. This joint resolution shall take effect immediately.
STATEMENT
This resolution establishes October 23 of each year as "Aromatic L-Amino Acid Decarboxylase Deficiency Day" in New Jersey.
The State of New Jersey supports protecting the health of vulnerable populations and young children, as well as educating the public and medical communities about rare diseases. A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. Aromatic L-Amino Acid Decarboxylase ("AADC") Deficiency is a life-limiting, severely debilitating genetic neurologic rare disease that significantly impacts a patient's development, motor skills, growth, cognition, and language skills. While some patients who are born with AADC Deficiency may be asymptomatic at birth, AADC patients typically experience symptoms within the first year of life such as developmental delay and involuntary eye movements. Caregivers of patients with AADC Deficiency are often responsible for the overall care of the patient due to the debilitating nature of this disease and patients may need life-long care. The State of New Jersey can raise awareness of AADC Deficiency in the public and medical communities within this State in order to support individuals with AADC Deficiency and their caregivers by designating this awareness day.
