Bill Text: NJ SJR130 | 2018-2019 | Regular Session | Introduced
Bill Title: Recognizes International 22q11.2 Foundation, and designates November 22 of each year as "22q Awareness Day" in New Jersey.
Spectrum: Partisan Bill (Republican 1-0)
Status: (Introduced - Dead) 2019-03-21 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [SJR130 Detail]
Download: New_Jersey-2018-SJR130-Introduced.html
Sponsored by:
Senator GERALD CARDINALE
District 39 (Bergen and Passaic)
SYNOPSIS
Recognizes International 22q11.2 Foundation, and designates November 22 of each year as "22q Awareness Day" in New Jersey.
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution recognizing the International 22q11.2 Foundation, and designating November 22 of each year as "22q Awareness Day" in New Jersey.
Whereas, The International 22q11.2 Foundation was founded in 2003 by the parents of children with medical conditions stemming from variations in chromosome 22q11.2; and
Whereas, The Foundation is recognized as the longest-standing organization that focuses on providing information and assistance to persons with these little known genetic chromosomal variations; and
Whereas, 22q11.2 chromosomal variations are currently diagnosed using a wide array of different names, such as DiGeorge Syndrome, velocardiofacial syndrome, conotruncal anomaly face syndrome, Opitz G-BBB syndrome, and Cayler Cardiofacial syndrome; and
Whereas, The Foundation has attempted to merge these varied clinical conditions under more unified names, including "22q11.2 deletion syndrome," and "22q11.2 duplication syndrome," in order to make it easier for people to identify the conditions; to enable patients and families across the globe to access consolidated information on the conditions; and to help connect families who were previously unable to connect with each other due to the differing names used in the diagnosis of these varied, but interrelated conditions; and
Whereas, The Foundation's website provides resources to enable affected patients and families to better, and more quickly and easily, understand a diagnosis of 22q11.2 deletion or duplication syndromes, and it provides an opportunity and a means for affected patients and families to connect and network with each other; and
Whereas, The Foundation has developed alliances with scientific and support organizations across the globe; and
Whereas, The Foundation's Medical Advisory Board has produced numerous scientific papers on 22q11.2 deletion and duplication syndromes, many of which were referenced in a recent issue of The American Journal of Medical Genetics that was devoted entirely to 22q11.2 deletion syndrome; and
Whereas, Since its founding, the Foundation's programs and resources have served more than 50,000 families affected by 22q11.2 deletion and duplication syndromes, and the Foundation has engaged in innumerable events designed to increase public awareness about these conditions; and
Whereas, Public awareness events, including "22q at the Zoo Worldwide Awareness Day," "22q and Boo," "22k for 22q," "2.2 for 22q," and "22q Awareness Month" activities, have served as the cornerstone of the Foundation's work for the past 15 years, and have been attended by many affected patients and families, as well as by health care providers and scientific researchers; and
Whereas, Because of the existence of the International 22q11.2 Foundation, patients and families affected by differences in chromosome 22q11.2 now have a comprehensive network of similarly situated persons and families that they can use to find support and share and discuss information related to these genetic conditions; and
Whereas, While the International 22q11.2 Foundation has made great strides in connecting patients and families affected by 22q11.2 chromosomal differences, the general public still has little knowledge about 22q11.2 deletion and duplication syndromes, and there is an ongoing need to increase awareness of these genetic conditions, so as to improve early detection, diagnosis, and care; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. The Legislature recognizes and lauds the International 22q11.2 Foundation for its superb achievements in promoting public awareness, creating and facilitating patient and family support and communications networks, and engaging in advocacy and research related to 22q11.2 genetic conditions.
2. November 22 of each year is hereby designated as "22q Awareness Day" in New Jersey, in order to: increase public awareness of the genetic conditions that are caused by variations in the 22q11.2 chromosome; encourage further study and early diagnosis of these conditions; highlight the work of the International 22q11.2 Foundation; and facilitate the connection of persons and families affected by these little-known genetic conditions.
3. The Governor is respectfully requested to issue an annual proclamation recognizing November 22 as "22q Awareness Day" in New Jersey, and calling upon public officials, the citizens of the State, and others to observe the month with appropriate activities and programs.
4. Copies of this resolution, as filed with the Secretary of State, shall be transmitted by the Clerk of the General Assembly or the Secretary of the Senate to the International 22q11.2 Foundation.
5. This joint resolution
shall take effect immediately.
STATEMENT
This resolution would designate November 22 of each year as "22q Awareness Day" in New Jersey, in order to: increase public awareness of the genetic conditions that are caused by variations in the 22q11.2 chromosome; encourage further study and early diagnosis of these conditions; highlight the work of the International 22q11.2 Foundation, which is the leading organization focusing on 22q11.2 chromosomal conditions; and facilitate the connection of persons and families affected by these little-known genetic conditions.
The resolution also recognizes and lauds the International 22q11.2 Foundation for its superb achievements in promoting public awareness, creating and facilitating patient and family support and communications networks, and engaging in advocacy and research related to 22q11.2 genetic conditions.
The International 22q11.2 Foundation was founded in 2003 by the parents of children with medical conditions stemming from variations in chromosome 22q11.2. The Foundation has since worked to merge these varied clinical conditions under more unified names, including "22q11.2 deletion syndrome," and "22q11.2 duplication syndrome," in order to make it easier for people to identify the conditions; enable families across the globe to access consolidated information on the conditions; and help connect families who were previously unable to connect with each other due to the differing names used in the diagnosis of these varied, but interrelated conditions. The Foundation has established alliances with scientific and support organizations across the globe; has prepared numerous medical papers on 22q11.2 deletion and duplication syndromes; has created an interconnected network of patients and families affected by these genetic conditions; and has engaged in innumerable events designed to increase public awareness about these conditions.
Because of the Foundation's work, patients and families affected by differences in chromosome 22q11.2 now have a network of similarly situated persons and families that they can use to find support and share and discuss information related to these genetic conditions. Since its founding, the Foundation's programs and resources have served more than 50,000 affected families. Nevertheless, despite the good work undertaken by the Foundation, the general public still has little knowledge about 22q11.2 deletion and duplication syndromes, and there is an ongoing need to increase awareness of these genetic conditions, so as to improve early detection, diagnosis, and care.
of each year as "22q Awareness Day" in New Jersey.
