petition and Brownback Kennedy Prentally and Postnatally Diagnosed Condition Awareness Bill

[Guest guest]

Ok, I sent the following message to family, friends,and several listservs:

feel free to pass it on.

We

currently have 1651 signatures, and would like to have as many as possible (the

goal is 5000) in the next couple of weeks. With your help, we can reach that

goal. Please sign it (if you haven’t already) and forward it to family,

friends, therapists, teachers, etc. Thanks to all of you who have already

signed it. Do I expect the petition, on its own, to make a difference? No, of

course, not. But it is SOMETHING. It doesn’t take a lot of time to sign it,

and, coupled with a personal letter, I believe it will make a difference. The

comments that people are leaving on the petition are very powerful, in my

opinion. If you don’t want to sign your name, for whatever reason, it is

possible to sign anonymously. Thank you!

http://www.thepetitionsite.com/1/DS-advocacy

Then

please send the link for the petition to your Senator

http://www.senate.gov/general/contact_information/senators_cfm.cfm

along

with a brief note asking him/her to support the Brownback Kennedy Prenatally

and Postnatally Diagnosed Condition Awareness Act.

http://www.patriciaebauer.com/2008/03/01/kennedy-brownback-bill-passes-senate-committee

A

member of the DownSyndromeInfoExchange listserv, whose husband is on Senator

Brownback’s staff, sent the following message:

From: ann45don

To: DownSyndromeInfoExchange

Sent:

Tuesday, March 18, 2008 10:55 AM

Subject:

[DownSyndromeInfoExchange] Re: Brownback Kennedy Bill (prenatal diagnosis Act)

status

I

think we should make a one last effort to get more signatures.

Could we try something? I know that my local down syndrome

association has received it and I will remind them again to sign it.

But has everyone for example on this list serve sent it to their

local associations/groups? If we could create some networking

quickly then I think it would have a stronger impact. Right now

Congress is in recess...so we could campaign for the next two weeks.

So that when Congress comes back they are hit with a bigger number

and more personal (meaning we need to send letters also) support.

How many states are represented in this listserve for example? Could

we make a list and see if we can hit at least every state? Using the

Database feature in this list serve?

Kathy what do you think?

If we can try to get it sent to every association in the country by

Friday it would be awesome!

Ann

[Guest guest]

I just signed it.Kathy Ratkiewicz wrote: Ok, I sent the following message to family, friends,and several listservs: feel free to pass it on. We currently have 1651 signatures, and would like to have as many as possible (the goal is 5000) in the next couple of weeks. With your help, we can reach that goal. Please

sign it (if you haven’t already) and forward it to family, friends, therapists, teachers, etc. Thanks to all of you who have already signed it. Do I expect the petition, on its own, to make a difference? No, of course, not. But it is SOMETHING. It doesn’t take a lot of time to sign it, and, coupled with a personal letter, I believe it will make a difference. The comments that people are leaving on the petition are very powerful, in my opinion. If you don’t want to sign your name, for whatever reason, it is possible to sign anonymously. Thank you! http://www.thepetitionsite.com/1/DS-advocacy Then please send the link for the petition to your Senator http://www.senate.gov/general/contact_information/senators_cfm.cfm along with a brief note asking him/her to support the Brownback Kennedy Prenatally and Postnatally Diagnosed Condition Awareness Act. http://www.patriciaebauer.com/2008/03/01/kennedy-brownback-bill-passes-senate-committee A member of the DownSyndromeInfoExchange listserv, whose husband is on Senator Brownback’s staff, sent the following message: From: ann45don To: DownSyndromeInfoExchange Sent: Tuesday, March 18, 2008 10:55 AM Subject: [DownSyndromeInfoExchange] Re: Brownback Kennedy Bill (prenatal diagnosis Act) status I think we should make a one last effort to get more signatures. Could we try something? I know that my local down syndrome association has received it and I will remind them again to sign it.But has everyone for example on this

list serve sent it to their local associations/groups? If we could create some networking quickly then I think it would have a stronger impact. Right now Congress is in recess...so we could campaign for the next two weeks.So that when Congress comes back they are hit with a bigger number and more personal (meaning we need to send letters also) support.How many states are represented in this listserve for example? Could we make a list and see if we can hit at least every state? Using the Database feature in this list serve?Kathy what do you think?If we can try to get it sent to every association in the country by Friday it would be awesome! Ann

[Guest guest]

Does anyone know how long for sure the petition will be online for

people to continue to sign? I am writing an editorial to our paper

and if I put the link in I want to be sure it will be active for a

while. It probably won't get in the paper until next week.

Here is my article. Constructive criticism appreciated.

I completely agree with Barbara Lapinski's letter to the editor,

Let's Work Together to Lower Abortion Rate. As the proud mother of 8-

year-old twin boys, one with Down syndrome, I especially appreciate

the part of her letter regarding prenatal diagnosis, including Down

syndrome. She said that she does not understand aborting a child

with Down syndrome and that most people she knows who have Down

syndrome live normal and happy lives. Only 30 years ago children

with Down syndrome were locked away in institutions and considered

uneducable, but we have come such a long way! Now, it is common to

see individuals with Down syndrome, given appropriate medical and

educational interventions, actively involved in their communities,

included in regular classrooms in their schools, going to college,

getting meaningful jobs, and getting married. They are friendly,

have feelings, are bright and aware, and can live long, happy, and

productive lives. They are loved unconditionally and treasured for

the tremendous amount of joy and pride they bring to their families.

As a parent of twins, one with Down syndrome and one without, I also

can testify that each child is challenging in their own way and just

because my one son happens to have Down syndrome does not mean that

he is any more difficult to raise or burdensome in any way.

A huge decrease in number of abortions can and should be made due to

prenatal diagnosis of Down syndrome. This has nothing to do with the

pro-life versus pro-choice issue. It is a eugenics issue. Down

syndrome has been targeted at this time in prenatal testing, and as a

result 90% of pregnancies with the diagnosis of Down syndrome are

terminated. The American College of Obstetrics and Gynecology has

actually done a cost-benefit analysis on Down syndrome and has made

two new recommendations in 2007 that increased prenatal testing

specifically for Down syndrome, while at the same time they provide

no recommendations regarding how a prenatal diagnosis is delivered or

if support should be offered to the family. This is important to

note because a study done in 2005 showed that mothers who have

children with Down syndrome, diagnosed prenatally, reported that

doctors did not tell them about the positive potential of people with

Down syndrome, nor did they feel like they received enough up-to-date

information or contact information to parent support groups. Being 8

months pregnant myself right now, I will tell you that I have been

pressured to have prenatal screening tests and a prenatal

amniocentesis, although these are all optional. As a new parent

contact for our local Down syndrome group, I have spoken with many

families who call me who are pregnant or have just delivered and who

are extremely upset and anxious because of negative information

received from their doctors and who, once they educate themselves on

what the diagnosis truly means and meet some children and families

who actually deal with Down syndrome on a daily basis, realize that

truly these kids are more typical than not!

Another alarming fact is that there are two companies currently

competing to be the fastest to develop an even earlier and more

accurate prenatal test specifically for Down syndrome. There is huge

money in this apparently. I am not opposed to research in order to

find a cure for Down syndrome, but abortion is definitely not the

cure and it only hurts the mother and family in the long run.

Individuals with Down syndrome are making such great strides in being

accepted by society and living typical lives but sadly, changing

attitudes of society and educating people about what Down syndrome is

and how it truly affects a family is not happening as fast as

technology and the desire of some uninformed and greedy people in the

business community and in the medical establishment to terminate.

Something we can do RIGHT NOW, and I ask you all to take action on,

is to sign an online petition at http://www.thepetitionsite.com/1/DS-

advocacy and then email the link of the petition to our Senators

(http://www.senate.gov/general/contact_information/senators_cfm.cfm)

along with a brief note asking him/her to support the bipartisan

Brownback-Kennedy Prenatally and Postnatally Diagnosed Condition

Awareness Act. Information about this bill can be found at

http://www.patriciaebauer.com/2008/03/01/kennedy-brownback-bill-

passes-senate-committee. This legislation would require that

families who receive a diagnosis of Down syndrome or any other

condition, pre-natally or up until a year after birth, will be given

up-to-date information about the nature of the condition and

connection with support services and networks that could offer

assistance.

Also, please contact the Down Syndrome Aim High Resource Center at

438-1113 for assistance, more information, or to donate or

volunteer. Their website is at aim-high.org.

Izzo

[Guest guest]

Well written except this sentence:

A huge decrease in number of abortions can and should be made due to prenatal diagnosis of Down syndrome.

---this sentence doesn't make sense

I was going to close the peition today but it's pretty pitiful with only 1,738 signatures...I set it up to go for another month or so, and will close it immediately when we hear that the Senate and Congress are going for a vote...then I will be emailing it to Senators and Congressmen (and asking you guys to help me with that)

So, with the article next week you are safe in assuming it will still be up.

I hope it's printed!!

Good luck!

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoExchange] Re: petition and Brownback Kennedy Prentally and Postnatally Diagnosed Condition Awareness Bill

Does anyone know how long for sure the petition will be online for people to continue to sign? I am writing an editorial to our paper and if I put the link in I want to be sure it will be active for a while. It probably won't get in the paper until next week.Here is my article. Constructive criticism appreciated.I completely agree with Barbara Lapinski's letter to the editor, Let's Work Together to Lower Abortion Rate. As the proud mother of 8-year-old twin boys, one with Down syndrome, I especially appreciate the part of her letter regarding prenatal diagnosis, including Down syndrome. She said that she does not understand aborting a child with Down syndrome and that most people she knows who have Down syndrome live normal and happy lives. Only 30 years ago children with Down syndrome were locked away in institutions and considered uneducable, but we have come such a long way! Now, it is common to see individuals with Down syndrome, given appropriate medical and educational interventions, actively involved in their communities, included in regular classrooms in their schools, going to college, getting meaningful jobs, and getting married. They are friendly, have feelings, are bright and aware, and can live long, happy, and productive lives. They are loved unconditionally and treasured for the tremendous amount of joy and pride they bring to their families. As a parent of twins, one with Down syndrome and one without, I also can testify that each child is challenging in their own way and just because my one son happens to have Down syndrome does not mean that he is any more difficult to raise or burdensome in any way. A huge decrease in number of abortions can and should be made due to prenatal diagnosis of Down syndrome. This has nothing to do with the pro-life versus pro-choice issue. It is a eugenics issue. Down syndrome has been targeted at this time in prenatal testing, and as a result 90% of pregnancies with the diagnosis of Down syndrome are terminated. The American College of Obstetrics and Gynecology has actually done a cost-benefit analysis on Down syndrome and has made two new recommendations in 2007 that increased prenatal testing specifically for Down syndrome, while at the same time they provide no recommendations regarding how a prenatal diagnosis is delivered or if support should be offered to the family. This is important to note because a study done in 2005 showed that mothers who have children with Down syndrome, diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome, nor did they feel like they received enough up-to-date information or contact information to parent support groups. Being 8 months pregnant myself right now, I will tell you that I have been pressured to have prenatal screening tests and a prenatal amniocentesis, although these are all optional. As a new parent contact for our local Down syndrome group, I have spoken with many families who call me who are pregnant or have just delivered and who are extremely upset and anxious because of negative information received from their doctors and who, once they educate themselves on what the diagnosis truly means and meet some children and families who actually deal with Down syndrome on a daily basis, realize that truly these kids are more typical than not! Another alarming fact is that there are two companies currently competing to be the fastest to develop an even earlier and more accurate prenatal test specifically for Down syndrome. There is huge money in this apparently. I am not opposed to research in order to find a cure for Down syndrome, but abortion is definitely not the cure and it only hurts the mother and family in the long run. Individuals with Down syndrome are making such great strides in being accepted by society and living typical lives but sadly, changing attitudes of society and educating people about what Down syndrome is and how it truly affects a family is not happening as fast as technology and the desire of some uninformed and greedy people in the business community and in the medical establishment to terminate. Something we can do RIGHT NOW, and I ask you all to take action on, is to sign an online petition at http://www.thepetitionsite.com/1/DS-advocacy and then email the link of the petition to our Senators (http://www.senate.gov/general/contact_information/senators_cfm.cfm) along with a brief note asking him/her to support the bipartisan Brownback-Kennedy Prenatally and Postnatally Diagnosed Condition Awareness Act. Information about this bill can be found at http://www.patriciaebauer.com/2008/03/01/kennedy-brownback-bill-passes-senate-committee. This legislation would require that families who receive a diagnosis of Down syndrome or any other condition, pre-natally or up until a year after birth, will be given up-to-date information about the nature of the condition and connection with support services and networks that could offer assistance.Also, please contact the Down Syndrome Aim High Resource Center at 438-1113 for assistance, more information, or to donate or volunteer. Their website is at aim-high.org. Izzo