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SCR-36 Aromatic L-amino Acid Decarboxylase (AADC) Deficiency Awareness Day. (2021-2022)

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SCR36:v98#DOCUMENT

Amended  IN  Senate  April 22, 2021

CALIFORNIA LEGISLATURE— 2021–2022 REGULAR SESSION

Senate Concurrent Resolution
No. 36


Introduced by Senator Melendez
(Coauthors: Senators Nielsen, Skinner, and Wiener)

April 13, 2021


Relative to aromatic l-amino acid decarboxylase deficiency awareness.


LEGISLATIVE COUNSEL'S DIGEST


SCR 36, as amended, Melendez. Aromatic L-amino Acid Decarboxylase (AADC) Deficiency Awareness Day.
This measure would proclaim October 23, 2021, as Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency Awareness Day in the State of California.
Fiscal Committee: NO  

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, There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated25,000,000 to 30,000,000; and estimated 25,000,000 to 30,000,000 Americans; and
WHEREAS, Some rare diseases are often severely debilitating, impact not only the patients but their families and loved ones, and have no effective treatments; and
WHEREAS, Aromatic l-amino acid decarboxylase (AADC) deficiency is a life-limiting, severely debilitating genetic neurologic condition that significantly impacts a patient’s development, motor skills, growth, and cognitive and language skills; and
WHEREAS, AADC deficiency results from an inherited genetic disease where patients lack the AADC enzyme that is required to create dopamine. Without dopamine, patients will never achieve motor milestones like holding their heads up, sitting, standing, or develop the ability to communicate or perform the most basic of life’s needs. Patients are diagnosed through genetic and other biochemical tests; and
WHEREAS, Patients suffering from AADC deficiency often have low muscle tone that is unexplained and not improving. There are also other symptoms, such as developmental delays and involuntary eye movements; and
WHEREAS, AADC deficiency affects approximately one in 100,000 people in the United States; and
WHEREAS, Caregivers of patients with AADC deficiency face many challenges and are often responsible for the overall care of the patient; and
WHEREAS, The Legislature can raise awareness of AADC deficiency in the public and medical communities; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature designates October 23, 2021, as AADC Deficiency Awareness Day and encourages Californians to become better informed about, and aware of, AADC deficiency; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.