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People with Down syndrome deserve advocacy from conception, not just after they are born.

 Position on Education of ACOG Members and Patients

Target:
ACOG, Diagnostic Testing Manufacturers, U.S. Congress and Senate

     We, parents, family members, friends, teachers, medical professionals and therapists of children and adults with Down syndrome are appalled and offended by the discrimination that the American College of Obstetricians and Gynecologists (ACOG) has shown in recommending invasive diagnostic testing for all pregnant women, regardless of age for Down syndrome.
      It is very well known that Down syndrome cannot be corrected in utero, and preparation emotionally could be a very valid reason for the prenatal testing of all women. But evidenced by the hundreds of testimonials by signers of this petition, it is clear that the purpose of first trimester screening is not to provide time for parents to prepare for the birth of a child with Down syndrome, but to enable and encourage parents to terminate a pregnancy once a diagnosis of Down syndrome is obtained.  Research has shown that  ACOG has provided no education to the physicians on how to deliver a prenatal diagnosis, and has provided NO information on the life realities of raising a child with Down syndrome, and, as a result, the majority of expectant parents are  being put in the position of having to make decisions regarding their unborn child based on inaccurate and unnecessarily negative information.  This leads to the astronomical statistic of 90% of the babies being aborted! This is, quite simply, unacceptable.
     The true purpose of ACOG's recommendation is to prejudicially eliminate babies with Down syndrome.  
      This petition also supports the pending vote for the Kennedy Brownback Prenatally Diagnosed Conditions Awareness Act. HR 3112/S 1810).                      
We believe it is sad that legislation must be enacted in order to provide accurate, timely, unbiased information to assist parents in making a decision on the future of their pregnancy.
    We implore ACOG and the manufacturers of diagnostic testing to work in conjunction with the National Down Syndrome Congress and the National Down Syndrome Society to create easily accessible education programs for their members and patients, and fund the marketing of these programs to their customers and membership.

     We, parents, family members, friends, teachers, medical professionals and therapists of children and adults with Down syndrome are appalled and offended by the discrimination that the American College of Obstetricians and Gynecologists (ACOG) has shown in recommending invasive diagnostic testing for all pregnant women, regardless of age for Down syndrome.
      It is very well known that Down syndrome cannot be corrected in utero, and preparation emotionally could be a very valid reason for the prenatal testing of all women. But evidenced by the hundreds of testimonials by signers of this petition, it is clear that the purpose of first trimester screening is not to provide time for parents to prepare for the birth of a child with Down syndrome, but to enable and encourage parents to terminate a pregnancy once a diagnosis of Down syndrome is obtained.  Research has shown that  ACOG has provided no education to the physicians on how to deliver a prenatal diagnosis, and has provided NO information on the life realities of raising a child with Down syndrome, and, as a result, the majority of expectant parents are  being put in the position of having to make decisions regarding their unborn child based on inaccurate and unnecessarily negative information.  This leads to the astronomical statistic of 90% of the babies being aborted! This is, quite simply, unacceptable.
     The true purpose of ACOG's recommendation is to prejudicially eliminate babies with Down syndrome.  
      This petition also supports the pending vote for the Kennedy Brownback Prenatally Diagnosed Conditions Awareness Act. HR 3112/S 1810).                      
We believe it is sad that legislation must be enacted in order to provide accurate, timely, unbiased information to assist parents in making a decision on the future of their pregnancy.
    We implore ACOG and the manufacturers of diagnostic testing to work in conjunction with the National Down Syndrome Congress and the National Down Syndrome Society to create easily accessible education programs for their members and patients, and fund the marketing of these programs to their customers and membership.

We the Undersigned want to make our voices heard to ACOG, the manufacturers of diagnostic testing, and  the U.S. Congress and Senate.

Thank you for taking the time to read our request.
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You are receiving this email because you signed the Petition in support of the Kennedy Brownback Prenatally Diagnossed Conditions Act AND in support of ACOG and the Diagnostic Testing manufactures funding and marketing timely accurate and unbiased information for parents witha prenatal diagnosis of Down syndrome.
Thank you very much for your support.

If you are one of the parents who has had a prenatal diagnosis and felt coerced to abort, OR had good support from your medical professionals (or had mixed responses) and would be interested in talking to your local legislators (Senator's and Congressmen's staff) regarding this as it pertains to the Kennedy Brownback Prenatally Diagnossed Condtions Act, please email me along with your city and state to
sandra.mcelwee@cox.net
Thank you again for your support.
Sandra McElwee

You can do more! Show me more petitions »
We signed the " Position on Education of ACOG Members and Patients" petition!
# 2,951:
3:51 pm PDT, May 14, Trish Scaduto, New York
# 2,950:
2:45 pm PDT, May 14, Amy Haber, New York
# 2,949:
1:31 pm PDT, May 14, Lisa Holmes, New York
# 2,948:
1:31 pm PDT, May 14, Karl Smith, North Carolina
I have a grandson, Mason who has Down Syndrome. He is one the most loving children that I know of. I am proud to be his grandfather and I love him very much. I am very glad that my daughter did not consider to abort.
# 2,947:
10:24 am PDT, May 14, Jane Wylie, New York
My son was diagnosed with Down Syndrome while I was pregnant because of prenatal testing. The physician who gave us the test results advised me and my husband that we had time to terminate the pregnancy, and referred us to a genetic counselor. This counselor discribed every possible aliment my son could have. She did not refer us to any parent who had a child with Down Syndrome. We found a parent through our church pastor, who contacted another parisher in the parish. We decided not to terminate. My son is now 7 years old and the joy of our lives! P.S. He was born healthy and continues to be healthy!

My son's name is John and he is 7 years old.

# 2,946:
7:53 am PDT, May 14, Melissa Shea, New York
# 2,945:
7:33 am PDT, May 14, Charles Kutch, New York
It is often said that the true measure of a society is how it treats its weakest and most vulnerable members. I strongly urge your support in this effort to protect all human life. Thank you
# 2,944:
6:50 am PDT, May 14, Denise M. Crean, New York
Samuel Crean, Male, Age 5
# 2,943:
5:02 am PDT, May 14, Jo-Anne Halford, United Kingdom
I have a grandson that has down syndrome. One of the doctors my daughter saw took her into a private room having called her into the hospital without giving any reason as to why he wanted to see her. This was worrying in itself and he then seriously wanted her to think about an abortion. She was 34 weeks. I am so glad the Consultant she saw a few days before had given her accurate information on downs syndrome both positives and negatives to allow her and her husband to be aware of what they could face. My grandson will soon be a year old he is a happy loving child and I love him with all my heart.
# 2,942:
4:16 am PDT, May 14, Patrick Halford, United Kingdom
# 2,941:
3:35 pm PDT, May 13, Susan King, United Kingdom
# 2,940:
8:44 pm PDT, May 12, Craig Simpson, Ohio
# 2,939:
7:52 pm PDT, May 12, Christine Palmer, Ohio
# 2,938:
9:32 pm PDT, May 11, Amy Horn, Colorado
# 2,937:
3:09 pm PDT, May 11, Ingrid Rikkert, Australia
Mother Emily age 3 years
# 2,936:
2:16 pm PDT, May 11, Mary Wilkins, Ohio
# 2,935:
9:37 am PDT, May 11, Megan Arant, Florida
# 2,934:
8:21 am PDT, May 11, Kristi Golden, California
15 years ago, at age 38, I consented to the "recommended" amnio test for my age. This was to be my first-born child, and much wanted. The test result was positive for Down syndrome, a diagnosis delivered to me over the phone by my obstetrican while I was at work. In shock, numb, and ignorant, I stumbled home, where my husband and I spent the next 10 days sorting out a decision that we were totally unprepared to face. The "gift of time" was the best thing my OB could give us. She said, "Don't rush the decision." And then she backed away to let us figure it out. (That was great, but it doesn't excuse her from calling me at work with the diagnosis -- do Doctors deliver cancer diagnosis' to patients while they are at work?). A friend said, "Look at all the options." We waded into it, explored each option (raising a child with Down syndrome, adopting out, and terminating) and ultimately chose the amazing path, raising our child, that has been the single-most life-changing experience, in a very positive way, of my entire life! Now, granted, most parents say that about having a child. But parents expecting a child with Down syndrome are not usually told that that can be a possibility. They are usually told all the down-sides of the diagnosis, and when the OB has a surgery-opening to perform the termination, and that it's best done earlier than later. Adoption as a viable option is seldom mentioned. Physicians, genetic counselors, and expectant parents need to become educated. My son, now 14, goes to a regular middle school, plays trumpet in the band, and won a bronze medal in Special Olympics Golf yesterday. He is a terrific big brother (at age 42 I had our second son, now age 10, who is "typical"), and looks forward to high school, girl friends, college, getting a job, being able to vote, and someday getting married! I look forward to supporting him to achieve these dreams and more. I can't bear to imagine what I would have given up...

14, male.

# 2,933:
9:10 am PDT, May 10, Donna Powell, North Carolina
As a parent of a child with Down's Syndrome, I can't imagine my life without him. No one should have a right to pass judgement on the right or the purposefulness of any person to be born or not. And yes, the diagnosis of Down's Syndrome needs to be shared with a new parent with knowledge and compassion. Please, those in the medical field become educated in sensitivity and positive approach.

Male 3 years old

# 2,932:
9:12 pm PDT, May 9, Norm Beveridge, Texas
As a parent of 2 children with Down syndrome, this is close to my heart. We were advised to "terminate" by an adamant geneticist due to indications of a different diagnosis, and I distinctly recall hearing "at least it's not Down's". That child is now 12 years old and doing great. Our other child with Down syndrome came to us through the miracle of adoption, thanks to the beautiful BirthMom being appalled at the immediate recommendation of abortion due to the Down syndrome diagnosis. We need to reconsider providing information rather than recommending taking of a life. Meeting a number of people of all ages with Down syndrome and families who've been positively impacted by this experience makes me sad that not everyone gets to know someone with the extra chromosome 21. We like to talk about change - let's start with worthy changes!
# 2,931:
7:34 pm PDT, May 9, Wilma Hathaway, Missouri
# 2,930:
12:57 pm PDT, May 9, Jamie Hatley, Tennessee
I don't have a child with Down Syndrome but I am 10 weeks pregnant and this test was offered to me & my husband by our OB. We refused the test because we would not abort the pregnancy regardless. And if the baby does have down syndrome, it wouldn't do any good to know now. It would just add a lot of un-needed stress to this pregnancy. The test should remain optional, I don't feel it should be required. It is the choice of the parents.
# 2,929:
6:51 am PDT, May 9, Nicholas Ford, Ohio
Maddie age 5.
# 2,928:
6:59 pm PDT, May 8, Casie Ford, Ohio
Madeline Ford, Age 5
# 2,927:
5:59 pm PDT, May 7, Name not displayed, Florida
I am a Special Olympics Cheerleading coach in a small town near Orlando, Fl. These kids are no different then us. Who even knows what normal is. We SHOULD not discriminate just because people with Down Syndrome have different needs then us.
# 2,926:
5:18 pm PDT, May 7, Becky Bartholomew, Ohio
# 2,925:
2:39 pm PDT, May 7, Name not displayed, Iowa
When I was pregnant with my daughter I chose not to have any testing done to find out whether or not my baby would be born with a disability. I had no intention of getting an abortion despite the results of the tests so I opted not to have them done at all. I did not like how doctors urged me to have tests done to check for Down syndrome and other disabilities. Now I am the very proud mother of a beautiful 3 year old who just so happens to have Down syndrome. If these tests are to be administered then proper education needs to be available for both doctors and patients. It makes my stomach turn when I hear someone aborted their fetus because it tested positive for a disability.

My child is 3 years old, nearly 4. She is a very happy little girl who just so happens to have Downs and who I can't imagine living without.

# 2,924:
5:58 am PDT, May 7, Rosa Joseph, Florida
# 2,923:
5:53 am PDT, May 7, Stephen Waite, Ohio
# 2,922:
11:18 pm PDT, May 6, Christine Blabe, California
Support Down Syndrome Kids and their families!
# 2,921:
11:19 am PDT, May 6, Ashley Smith, Kentucky
# 2,920:
8:12 am PDT, May 6, Courtney Lake, Kentucky
I think this is totally disrespectfully to anyone in this situation. Everyone deserves a chance at life.
# 2,919:
10:40 am PDT, May 5, Tim Sullivan, Ohio
# 2,918:
9:37 am PDT, May 5, Sandra Smyth, Maryland
I have a 3 year old nephew with Down Syndrome. He is a true joy and love of all our lives.
# 2,917:
6:56 am PDT, May 5, Deb Begreen, Massachusetts
# 2,916:
3:15 pm PDT, May 4, Chad Simpson, Texas
# 2,915:
5:23 am PDT, May 4, Cynthia McCullough, Ohio
# 2,914:
10:09 pm PDT, May 3, Brenda Mierczynski, California
# 2,913:
7:00 pm PDT, May 3, Ann Sissler, New York
Please consider enacting legislation that requires MD's to provide accurate, timely, unbiased information to assist parents in making a decision on the future of their pregnancy.
# 2,912:
5:47 pm PDT, May 3, Penny Warner, Ohio
I am a nurse who is caring for a four year old male who has Down syndrome,and he is the sweetest little boy I have ever known. I truely believe they are God's gifts to us, to remind us how important it is to love and care for one another in life. Because that is exactly how you feel when you are around a child with Downs syndrome. They truly win your heart over with thier loving and sweet ways about them.
# 2,911:
12:55 pm PDT, May 3, Patti Khune, Ohio
# 2,910:
12:49 pm PDT, May 3, Richard Underman, Ohio
# 2,909:
10:54 am PDT, May 3, Sarah Hawkins, Ohio
# 2,908:
9:39 pm PDT, May 2, Bryan Fay, Massachusetts
# 2,907:
7:35 pm PDT, May 2, Name not displayed, Ohio
# 2,906:
3:59 pm PDT, May 2, Kristen Cimino, California
# 2,905:
2:16 pm PDT, May 2, Christopher Wyatt, Michigan
# 2,904:
1:34 pm PDT, May 2, Melanie Mulvey, Utah
I absolutely wouldn't change a thing about my child with Down Syndrome, and it is sad to me that people will simply choose not to have the opportunity a child like this provides, basically because of ignorance and fear - that results from the lack of education provided with pre-natal diagnosis.

2 year old Male

# 2,903:
1:13 pm PDT, May 2, Viviane Taschner, California
Everyone has the right to live and be happy, and our son with Down syndrome is the happiest little guy. Nolan is 16 month old and he has fulfilled our family with an amazing happiness.
# 2,902:
12:08 pm PDT, May 2, Christina DeAvila, Massachusetts
# 2,901:
11:41 am PDT, May 2, Tom Beninati, New York
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