22Q People, Projects, and Campaigns You Should Know About! is a 501(c) 3 organization and your donation is tax deductible. Donations are managed by Network for Good.
Your state does not test for 22q Deletion Syndrome. Some might be frightened to lean that 22q11.2 Deletion Syndrome could cause six of the top ten leading causes of infant mortality.
In the U.S. sometime during first two days of an infant's life they have a simple blood test called the Newborn Screen or The Heel Stick. Just a few drops of blood contain information that can save babies lives. The newborn screen is used to detect dozens of rare conditions that are hidden at birth. However, there are vast differences in state policies that leave families vulnerable. While all states require newborn screening by law. Some states test for 50 disorders, but MANY test for less. It's important that you know and understand which disorders are tested for in your states program.
We would like you to know that newborn screening for children with 22q11.2 Deletion Syndrome could mean the difference between having to react to unforeseen health emergencies or the ability to proactively manage the health of your child with a proper road map. Many families are forced to make difficult decisions about treatments, therapies, medication, and surgeries without getting an actual diagnosis of 22q11.2 Deletion Syndrome.
We would love for the United States to lead the way as an example for families around the world who are connected by this tiny missing piece of chromosome. With that said the data collection and research necessary to accomplish our goal of having 22q11.2 Deletion Syndrome added to the newborn screen is a sizeable undertaking.
In the U.S. one must nominate a disorder to the U.S. Secretary's Advisory Committee on Heritable Disorders in Newborns and Children to request that a disorder be added to the national screen.
On January 26, 2012 representatives from The Dempster Family Foundation, Children's Hospital of Wisconsin, Children's Hospital of Philadelphia, The International 22q Foundation, Max Appeal, and The University of Toronto took that step. The committee denied our first request based on a number of items they feel require additional data. (click here to read why) This data can only be accomplished through additional research and pilot studies.
All of this is possible if the funds to support the work can be raised.
We kindly ask that you donate to this effort if you can. Please share this page with your friends and family… and ask them to do the same.