Bill Text: NJ SJR53 | 2014-2015 | Regular Session | Introduced
Bill Title: Designates July 22 of each year as "Fragile X Awareness Day."
Spectrum: Slight Partisan Bill (Republican 4-2)
Status: (Engrossed - Dead) 2015-06-25 - Received in the Assembly, Referred to Assembly Health and Senior Services Committee [SJR53 Detail]
Download: New_Jersey-2014-SJR53-Introduced.html
Sponsored by:
Senator STEVEN V. OROHO
District 24 (Morris, Sussex and Warren)
Senator JOSEPH F. VITALE
District 19 (Middlesex)
Co-Sponsored by:
Senators Beck, Doherty and Bateman
SYNOPSIS
Designates July 22 of each year as "Fragile X Awareness Day."
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating July 22 of each year as "Fragile X Awareness Day."
Whereas, Fragile X-associated Disorders (FXD) is a family of three genetic conditions, called trionucleotide repeat disorders, all caused by changes in the FMR1 gene, that can be passed on unknowingly by carriers who do not exhibit symptoms of any of the disorders; and
Whereas, Approximately one million Americans carry the Fragile X mutation and are therefore at risk for developing an FXD; and
Whereas, Fragile X Syndrome is a genetic disorder involving changes in part of the X chromosome, caused by a full mutation of the FMR1 gene, which makes a protein necessary for proper brain growth; and
Whereas, Although males and females can be affected by FXD, since males only have one X chromosome, a single fragile X is likely to affect males more severely; and
Whereas, Approximately one in 3,600 to 4,000 males in the world are born with the full mutation for Fragile X, with the vast majority having Fragile X Syndrome, and it is the most common form of inherited intellectual disability in males; and
Whereas, One in 4,000 to 6,000 females in the world are born with the full mutation for Fragile X, and approximately 50 percent of these females exhibit some features or symptoms of Fragile X Syndrome; and
Whereas, Fragile X Syndrome is the most common known genetic cause of autism, with two to six percent of children with autism being diagnosed with Fragile X Syndrome, and autism is much more common in males with Fragile X Syndrome than in females with Fragile X Syndrome; and
Whereas, Problems associated with Fragile X Syndrome are developmental delays, hyperactive or impulsive behavior, hand clapping or hand biting, intellectual disability, speech and language delay and a tendency to avoid eye contact; and
Whereas, Fragile X-associated tremor/ataxia syndrome (FXTAS), a progressive disorder caused by premutation in the FMR1 gene, and characterized by problems with movement and cognition, is a late-onset disorder, usually occurring after the age of 50; and
Whereas, One in 450 males has the genetic change that leads to FXTAS, but the condition occurs in only 40 percent of those males, and one in 200 females has the genetic change that leads to FXTAS, but the condition occurs in only 16 percent of those females; and
Whereas, Characteristic features of FXTAS are intention tremor, which is the trembling of a limb when trying to perform a voluntary movement, and problems with coordination and balance; and
Whereas, Fragile X-associated primary ovarian insufficiency (FXPOI), a condition in which the ovaries are not functioning at full capacity in a female FMR1 premutation carrier, is characterized by absent or irregular menstrual periods, symptoms of menopause (such as hot flashes), early menopause and infertility; and
Whereas, FXPOI occurs in approximately 20 to 25 percent of adults female FMR1 premutation carriers, and less commonly is reported in teenagers who are carriers; and
Whereas, While the gene mutation responsible for FXDs is known, there is presently no cure for any of the three conditions, and increased awareness of these disorders may lead to more varied and superior treatment and prevention options; and
Whereas, It is altogether fitting and proper, as a matter of public health, to designate July 22 of each year as "Fragile X Awareness Day"; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. July 22 of each year is designated "Fragile X Awareness Day" to promote awareness and improve diagnosis, treatment and scientific research of this genetic disorder.
2. The Governor shall annually issue a proclamation and call upon public officials, and all citizens of this State, to observe "Fragile X Awareness Day" with appropriate programs and activities.
3. This joint resolution shall take effect immediately.
STATEMENT
This resolution designates July 22 of each year as "Fragile X Awareness Day." Fragile X-associated Disorders (FXD) is a family of three conditions caused by changes in the gene FMR1.
Although FXDs can occur in males and females, because the disorder is related to the X chromosome, males are generally more severely affected. Fragile X Syndrome is a full mutation of FMR1, and is characterized by developmental delays, hyperactive or impulsive behavior, hand clapping or hand biting, intellectual disability, speech and language delay and a tendency to avoid eye contact. It is the most common form of inherited intellectual disability in males, and is the most common known genetic cause of autism.
Fragile X-associated tremor/ataxia syndrome (FXTAS), a disorder caused by a FMR1 gene premutation, usually occurs after the age of 50. Characteristic features of FXTAS are intention tremor, which is the trembling of a limb when trying to perform a voluntary movement, and problems with coordination and balance, and the disorder is progressive over time.
Fragile X-associated primary ovarian insufficiency (FXPOI), is characterized by absent or irregular menstrual periods, symptoms of menopause (such as hot flashes), early menopause and infertility.
Although the gene mutation of FMR1 causing these disorders is known, there is no known cure for any of these conditions. Research is needed to develop superior treatment options, as well as potential cures and prevention.
It is the sponsor's hope that the designation of July 22 as "Fragile X Awareness Day" raises awareness of these genetic disorders.
