Bill > SJR99

Introduced Session

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.

AI Summary

Committee Categories

Owen Henry (R)*, 

Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee (on 03/11/2024)

Official Document