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ADD 22Q to newborn screening
To: Kathleen Sebelius, US Secretary Health and Human Services, Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children
Dear members of the US Secretary’s Advisory Committee on Heritable Disorders in Newborns: We call upon you to add 22q Deletion Syndrome to the U.S. Newborn Screen: Please put all possible measures in place to save the lives of children born with 22q Deletion syndrome, who often go undignosed...
…This petition closed on February 1, 2013.
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5,667 people signed the petition
A year ago, we received an email from Dr. Jack Routes, a clinical immunologist/physician scientist at the Medical College of Wisconsin. He described one major focus of his research was to develop and then implement an inexpensive, sensitive and specific test that would identify newborn infants with 22q.11.2. He went on to describe that he, along with Dr.Aoy Mitchell had indeed developed such a test and that the next step would be nominating this inexpensive option to the Secretary's Advisory Committee on Heritable Disorder in Newborns and Children.
This syndrome is associated with approximately 180 different diagnostic findings that range from mild to life-threatening. This wide disparity between diagnosis, degree of affect and related multi-specialty physician interaction, often leads to delayed or missed diagnosis. Some of the most prevalent health concerns are also the most challenging for the affected child, their families, healthcare providers and education professionals. Conditions such as; heart defects, cranial-facial differences, breathing difficulties leading to frequent tracheotomies, gastrointestinal issues leading to feeding tube placement, immune deficiencies, hearing loss, low calcium and other endocrine issues.
Learning disabilities are often recognized later in the child's development pathway with ADD/ADHD/Autism/Social Awkwardness/Anxiety. There is also a potential for additional psychological effects. Conversely, this diagnosis can also be associated with a unique awareness or a heightened ability to excel in areas such as; art, music, literature, engineering or many other sensory-related fields.
The Dempster Family Foundation has identified 22qDS education and awareness as a key foundation initiative during 2012. The DFF is positioned to assist the global 22qDS community with educational support, parent empowerment programs, awareness campaigns, research grants and physician education that ultimately lead to earlier diagnosis and treatment.
Michelle Breedlove Sells
The Dempster Family Foundation
Email: mbreedlovesells@dempsterfamilyfoundation.org
Website: www.22qBus.com
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Update #4
Posted by Michelle Breedlove Sells (Campaign Leader) on Oct 11, 2012Hello All,
Just a quick note to inform each of you that in the first 84 days of this petition's life we received just 1700 signatures... BUT IN THE LAST 17 DAYS WE GAINED 2000signatures!!! This rapid increase is due to your much appreciated attention to this matter.
WE APPRECIATE YOU AND YOUR AID IN THIS EFFORT.AND GET THIS.... A representative from Facebook causes emailed me this week and wrote "I noticed that your petition about 22Q has been gaining momentum on Causes." and expressed...
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Update #3
Posted by Michelle Breedlove Sells (Campaign Leader) on Oct 2, 2012WE ARE OVER 3000 TODAY!
Have friends or family that don't have a Facebook account???
They can sign an alternate petition hosted here:
http://www.change.org/petitions/add-6-test-to-u-s-newborn-screen-save-lives-moneyThanks
Michelle Breedlove Sells -
Update #2
Posted by Michelle Breedlove Sells (Campaign Leader) on Oct 1, 2012This petition was created on June 25th (3 months ago). Last Monday we only had 1723 signatures. So, I took to my facebook page and vented my personal frustration about being more than 8000 signatures away from the (very resonable) goal of 10,000 we hoped to gain by January 31st.
Many thanks to those who sounded the alarm and began fueling the fire of this cause.
OVER THE LAST 7 DAYS WE ADDED 1092 SIGNATURES!
THAT IS MORE THAN WE GAINED IN THE PREVIOUS 3 MONTHS!BRAVO! We still have a...
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Update #1
Posted by Michelle Breedlove Sells (Campaign Leader) on Sep 25, 2012We added another 200 signatures today! Over 500 signatures in the last two days!
If we keep up this pace in 9 days we can celebrate an impressive win in Round #1 of the fight to ADD 22Q TO US NEWBORN SCREEN!32.000 children worldwide...
It's about every child around the world who did not get diagnosed today.
Some of those new parents are likely already experiencing the overwhelming fear of being told the baby is having some "issues". Others are completely unaware of the 186 hurdles...
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Recent Signatures
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5,667Anna Hessel Franklin Park, IL3 mos ago
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5,666Dan Larivey Boyce, VA3 mos ago
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5,665Carmen Mallamaci Daytona Beach, FL3 mos ago
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5,664Sierra Lynn Caribou, ME3 mos ago
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5,663Clara Gold Clarksville, TN3 mos ago
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5,662Bob Tobe Roselle Park, NJ3 mos ago
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Discuss the petition
Please sign this petition. There is only 8 days left. That way babies like Alexis don't fall through the cracks and go unoticed, misdiagnosed, or untreated. Alexis has been diagnosed with this DiGeorge Syndrome. The 22q11.2 deletion syndrome(also known as VCFS or DiGeorge) is caused by a missing section (microdeletion) of chromosome 22 which is present from the time a child is conceived. Present in 1 out of every 2,000-4,000 live births, in 1 in 68 children with congenital heart disease,...
…Please sign this petition. There is only 8 days left. That way babies like Alexis don't fall through the cracks and go unoticed, misdiagnosed, or untreated. Alexis has been diagnosed with this DiGeorge Syndrome. The 22q11.2 deletion syndrome(also known as VCFS or DiGeorge) is caused by a missing section (microdeletion) of chromosome 22 which is present from the time a child is conceived. Present in 1 out of every 2,000-4,000 live births, in 1 in 68 children with congenital heart disease, and in 5 to 8 percent of children born with cleft palate, the 22q11.2 deletion is almost as common as Down syndrome, a widely recognized chromosomal disorder. The deletion has the potential to affect almost every system in the body and can cause a wide range of health problems. No two people are ever exactly alike, even when they have the same syndrome, and not every person with the deletion is affected in the same way. Though not always present, the key characteristics of this syndrome include combinations and varying degrees of the following.
http://www.22qbus.com/index.php/who-s-on-the-bus-this-month
Well
Oh dear just back online so MISSED signing ~ great job spreading the IMPORTANT WORD... keep up the wonderful work! God bless you all!
Everyone get off their game apps and take a couple minutes to sign this Petition, we need more awareness and possible cures to be focused on!
Please sign this petition. There is only 8 days left. That way babies like Alexis don't fall through the cracks and go unoticed, misdiagnosed, or untreated. Alexis has been diagnosed with this DiGeorge Syndrome. The 22q11.2 deletion syndrome(also known as VCFS or DiGeorge) is caused by a missing section (microdeletion) of chromosome 22 which is present from the time a child is conceived. Present in 1 out of every 2,000-4,000 live births, in 1 in 68 children with congenital heart disease, and...
…Please sign this petition. There is only 8 days left. That way babies like Alexis don't fall through the cracks and go unoticed, misdiagnosed, or untreated. Alexis has been diagnosed with this DiGeorge Syndrome. The 22q11.2 deletion syndrome(also known as VCFS or DiGeorge) is caused by a missing section (microdeletion) of chromosome 22 which is present from the time a child is conceived. Present in 1 out of every 2,000-4,000 live births, in 1 in 68 children with congenital heart disease, and in 5 to 8 percent of children born with cleft palate, the 22q11.2 deletion is almost as common as Down syndrome, a widely recognized chromosomal disorder. The deletion has the potential to affect almost every system in the body and can cause a wide range of health problems. No two people are ever exactly alike, even when they have the same syndrome, and not every person with the deletion is affected in the same way. Though not always present, the key characteristics of this syndrome include combinations and varying degrees of the following.
http://www.22qbus.com/index.php/who-s-on-the-bus-this-month
Ps. sign this and help babies like mine.....we are there voice for now.....If it wasnt for My family sticking together and pushing for more we could of lost our little girl Alexis.