No. 190
STATE OF NEW JERSEY
221st LEGISLATURE
INTRODUCED SEPTEMBER 12, 2024
Sponsored by:
Assemblyman MICHAEL VENEZIA
District 34 (Essex)
Assemblyman HERB CONAWAY, JR.
District 7 (Burlington)
Co-Sponsored by:
Assemblywomen Morales, Reynolds-Jackson and Assemblyman Rodriguez
SYNOPSIS
Designates May 7 of each year as Cystinosis Awareness Day in New Jersey.
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating May 7 of each year as Cystinosis Awareness Day in New Jersey.
Whereas, Cystinosis is a rare genetic disorder that affects approximately 2,000 individuals worldwide and approximately 500 to 600 Americans, with reported cases of children diagnosed with cystinosis in New Jersey; and
Whereas, Cystinosis causes an amino acid called cystine to accumulate and crystalize in cells, causing severe organ dysfunction and irreversible damage; and
Whereas, While cystinosis primarily affects the kidneys and eyes, cystine crystallization directly impacts soft tissue and may damage the brain, muscles, liver, thyroid, pancreas, testes, and central nervous system; and
Whereas, The three clinical variants of cystinosis are categorized by the age of onset and severity of renal disease: (1) infantile nephropathic cystinosis, the most severe variant, develops during infancy; (2) intermediate or juvenile nephropathic cystinosis develops during childhood or adolescence; and (3) non-nephropathic or ocular cystinosis, a benign form of cystinosis, affects the eyes in middle-aged adults; and
Whereas, Infantile nephropathic cystinosis accounts for 95 percent of the total cases of cystinosis and is associated with high morbidity and mortality; and
Whereas, Cystine crystallization begins in utero but newborns with infantile nephropathic cystinosis are generally asymptomatic at birth and develop symptoms, including excessive thirst, excessive urination, dehydration, impaired ability to sweat, inability to swallow, failure to thrive, rickets, and kidney disease, during the first year of life; and
Whereas, If left untreated, infantile nephropathic cystinosis can lead to complete kidney failure by age 10 and premature death; and
Whereas, Although there is no known cure, advancements in cystinosis treatments approved by the United States Food and Drug Administration (FDA), including cystine-depleting therapy, have helped to improve survival rates, extend life expectancy by 30 to 40 years, and enable individuals with cystinosis to enjoy a satisfactory quality of life; and
Whereas, Early detection, initiation of treatment, and strict compliance with FDA-approved treatment regimens are critical to improving prognoses and long-term outcomes for individuals with cystinosis; and
Whereas, However, the rarity of cystinosis and delayed symptom onset may impede early detection and access to lifesaving treatment; and
Whereas, In 2018, the Cystinosis Research Network, a national non-profit organization, designated May 7 as Cystinosis Awareness Day to raise awareness about the disease and how it affects individuals and their families, foster education, and advance advocacy, research, and fundraising efforts; and
Whereas, The Cystinosis Research Network specifically selected May 7 (5/7) as the commemorative date to represent the 57-kb deletion, which is the most common cystinosis mutation among Northern Europeans and is associated with increased risk of morbidity and mortality; and
Whereas, Increasing awareness of cystinosis in New Jersey is in the public interest as early detection and prompt treatment are key to slowing the development and progression of the disease and significantly improving health outcomes; and
Whereas, Recognizing May 7 of each year as Cystinosis Awareness Day in New Jersey will amplify efforts to educate the citizens of the State of New Jersey about this rare disease, support research and advocacy initiatives in the State, and improve the lives of individuals affected by cystinosis; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. May 7 of each year shall be designated as Cystinosis Awareness Day in New Jersey.
2. The Governor is requested to issue a proclamation annually to recognize Cystinosis Awareness Day and call upon relevant State agencies, organizations, and citizens of the State to participate in appropriate awareness activities and initiatives.
3. This joint resolution shall take effect immediately.
STATEMENT
This resolution designates May 7 of each year as Cystinosis Awareness Day in New Jersey to raise public awareness and to promote research, advocacy, and fundraising initiatives. Cystinosis is a rare genetic disorder affecting approximately 2,000 individuals worldwide and approximately 500 Americans, including children in New Jersey.
Cystinosis causes cystine crystals to accumulate in cells, irreversibly damaging soft tissue and major organs, including the kidneys, eyes, brain, muscles, liver, thyroid, pancreas, testes, and central nervous system. Infantile nephropathic cystinosis, the most common and severe variant, accounts for 95 percent of the total cases. If left untreated, infantile nephropathic cystinosis can cause complete kidney failure by age 10 and premature death.
While there is no cure for cystinosis, early detection, initiation of treatment, and compliance with treatment regimens are key to achieving positive outcomes. Cystinosis treatments have improved survival rates, extended life expectancy by 30 to 40 years, and enabled individuals with cystinosis to enjoy a satisfactory quality of life. However, the rarity of the condition and delayed symptom onset in some individuals may impede early detection and access to treatment.
In 2018, the Cystinosis Research Network designated May 7 as Cystinosis Awareness Day to raise awareness and garner support through education and fundraising. Joining the Cystinosis Research Network in recognizing May 7 of each year as Cystinosis Awareness Day in New Jersey will amplify efforts to educate New Jersey residents about cystinosis and advance advocacy initiatives aimed at improving health outcomes for individuals living with cystinosis.
To that end, May 7 of each year shall be designated as Cystinosis Awareness Day in New Jersey. The Governor is requested to issue a proclamation annually to recognize Cystinosis Awareness Day and call upon relevant State agencies, organizations, and citizens of the State to participate in awareness initiatives.