Bill Text

Bill Information


Bill PDF |Add To My Favorites | print page

HR-125 (2023-2024)

SHARE THIS: share this bill in Facebook share this bill in Twitter
HR125:v99#DOCUMENT


CALIFORNIA LEGISLATURE— 2023–2024 REGULAR SESSION

House Resolution
No. 125


Introduced by Assembly Member Blanca Rubio

August 15, 2024


Relative to Aromatic L-Amino Acid Decarboxylase Deficiency Awareness Day.


LEGISLATIVE COUNSEL'S DIGEST


HR 125, as introduced, Blanca Rubio.

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 estimated 25,000,000 to 30,000,000, inclusive, Americans; and
WHEREAS, Some rare diseases are often severely debilitating, impacting 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, or standing, 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 is a rare genetic neurological disease, and there have been approximately 350 cases of AADC Deficiency reported worldwide; 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 Assembly of the State of California, That the Assembly designates October 23, 2024, as Aromatic L-Amino Acid Decarboxylase Deficiency Awareness Day and encourages Californians to become better informed about, and aware of, AADC deficiency; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.