{"id":8539,"date":"2014-10-27T08:06:00","date_gmt":"2014-10-27T08:06:00","guid":{"rendered":"http:\/\/www.catholicnewsagency.com\/news\/educate-legislate-fund-three-responses-to-down-syndrome-15243\/"},"modified":"2014-10-27T08:06:00","modified_gmt":"2014-10-27T08:06:00","slug":"educate-legislate-fund-three-responses-to-down-syndrome","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/","title":{"rendered":"Educate, legislate, fund: three responses to Down syndrome"},"content":{"rendered":"\n<\/head>

<\/p>\n

Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News<\/a>).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said.<\/p>\n

\t\u201cIn a sense, Down syndrome is the canary in the coal mine, it\u2019s the test case of how we in a society will deal with difference in disability,\u201d said Mark Bradford of the Jerome Lejeune Foundation.<\/p>\n

\t\u201cWill we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?\u201d<\/p>\n

\tThe March for Life hosted a panel discussion on the theme for the upcoming march \u201cEvery Life is Precious,\u201d to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month.<\/p>\n

\tAccording to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted.<\/p>\n

\tHowever, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy.<\/p>\n

\t\u201cWe really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,\u201d Bradford said.<\/p>\n

\tAccording to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy.<\/p>\n

\t\u201cIndividuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,\u201d the report stated, but since most parents still choose abortion, that \u201craises critical questions\u201d about how medical professionals deliver the diagnosis.<\/p>\n

\tIn fact, Bradford added, according to a study \u201cone in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.\u201d And most \u2013 a rate of 2.5 to 1 \u2014 reported a negative experience when receiving their prenatal diagnosis.<\/p>\n

\t\u201cWe can see that the medical community is still behind the curve in terms of what parents\u2019 understanding is,\u201d Bradford stated.<\/p>\n

\tMore funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, \u201cthe only way to save them is to cure them.\u201d<\/p>\n

\tYet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added.<\/p>\n

\t\u201cNIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,\u201d he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person.<\/p>\n

\t\u201cSo we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,\u201d he remarked.<\/p>\n

\tAnd much progress has been made with research for the disease, the Lozier report claimed.<\/p>\n

\t\u201cMedical research has made incredible strides toward improving the lives of those
\n\tliving with Down syndrome, but even more exciting are advances that have taken
\n\tplace in investigating prenatal therapies to improve birth outcomes,\u201d the report stated.<\/p>\n

\t\u201cSuccess in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.\u201d<\/p>\n

\tLastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress.<\/p>\n

\tThe bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability.<\/p>\n

\tIn September, the Senate Finance Committee announced it had agreed to move the bill forward.<\/p>\n

\t\u201cUnder the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act,\" the committee said Sept. 22 in a statement.<\/p>\n

\t\"Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President\u2019s desk in the lame duck session.\u201d
\n\t\u00a0<\/p>\n

\n<\/a>\n<\/div>\n

<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

<\/p>\n

Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News<\/a>).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said.<\/p>\n

\t“In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation.<\/p>\n

\t“Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?”<\/p>\n

\tThe March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month.<\/p>\n

\tAccording to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted.<\/p>\n

\tHowever, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy.<\/p>\n

\t“We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said.<\/p>\n

\tAccording to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy.<\/p>\n

\t“Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis.<\/p>\n

\tIn fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 — reported a negative experience when receiving their prenatal diagnosis.<\/p>\n

\t“We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated.<\/p>\n

\tMore funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.”<\/p>\n

\tYet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added.<\/p>\n

\t“NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person.<\/p>\n

\t“So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked.<\/p>\n

\tAnd much progress has been made with research for the disease, the Lozier report claimed.<\/p>\n

\t“Medical research has made incredible strides toward improving the lives of those
\n\tliving with Down syndrome, but even more exciting are advances that have taken
\n\tplace in investigating prenatal therapies to improve birth outcomes,” the report stated.<\/p>\n

\t“Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.”<\/p>\n

\tLastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress.<\/p>\n

\tThe bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability.<\/p>\n

\tIn September, the Senate Finance Committee announced it had agreed to move the bill forward.<\/p>\n

\t“Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act,” the committee said Sept. 22 in a statement.<\/p>\n

\t“Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”
\n\t <\/p>\n

\n<\/a>\n<\/div>\n

<\/p>\n","protected":false},"author":1031,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[],"class_list":["post-8539","post","type-post","status-publish","format-standard","hentry","category-us"],"yoast_head":"\nEducate, legislate, fund: three responses to Down syndrome<\/title>\n<meta name=\"description\" content=\"Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said. “In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation. “Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. In September, the Senate Finance Committee announced it had agreed to move the bill forward. “Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act," the committee said Sept. 22 in a statement. "Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”  \" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Educate, legislate, fund: three responses to Down syndrome\" \/>\n<meta property=\"og:description\" content=\"Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said. “In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation. “Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. In September, the Senate Finance Committee announced it had agreed to move the bill forward. “Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act," the committee said Sept. 22 in a statement. "Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”  \" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/\" \/>\n<meta property=\"og:site_name\" content=\"Catholic News\" \/>\n<meta property=\"article:published_time\" content=\"2014-10-27T08:06:00+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/www.catholicnewsagency.com\/images\/size340\/Boy_7_10_with_down_syndrome_in_a_classroom_Credit_George_Doyle_Stockbyte_CNA_10_27_14.jpg\" \/>\n<meta name=\"author\" content=\"CNA Daily News\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"CNA Daily News\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/\",\"url\":\"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/\",\"name\":\"Educate, legislate, fund: three responses to Down syndrome\",\"isPartOf\":{\"@id\":\"https:\/\/www.patheos.com\/blogs\/catholicnews\/#website\"},\"datePublished\":\"2014-10-27T08:06:00+00:00\",\"dateModified\":\"2014-10-27T08:06:00+00:00\",\"author\":{\"@id\":\"https:\/\/www.patheos.com\/blogs\/catholicnews\/#\/schema\/person\/35d4bd7addc580050842c844a11575f1\"},\"description\":\"Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said. “In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation. “Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. 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Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. In September, the Senate Finance Committee announced it had agreed to move the bill forward. “Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act,\" the committee said Sept. 22 in a statement. \"Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”  ","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/","og_locale":"en_US","og_type":"article","og_title":"Educate, legislate, fund: three responses to Down syndrome","og_description":"Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said. “In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation. “Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. In September, the Senate Finance Committee announced it had agreed to move the bill forward. “Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act,\" the committee said Sept. 22 in a statement. \"Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”  ","og_url":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/","og_site_name":"Catholic News","article_published_time":"2014-10-27T08:06:00+00:00","og_image":[{"url":"http:\/\/www.catholicnewsagency.com\/images\/size340\/Boy_7_10_with_down_syndrome_in_a_classroom_Credit_George_Doyle_Stockbyte_CNA_10_27_14.jpg"}],"author":"CNA Daily News","twitter_card":"summary_large_image","twitter_misc":{"Written by":"CNA Daily News","Est. reading time":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/","url":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/","name":"Educate, legislate, fund: three responses to Down syndrome","isPartOf":{"@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/#website"},"datePublished":"2014-10-27T08:06:00+00:00","dateModified":"2014-10-27T08:06:00+00:00","author":{"@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/#\/schema\/person\/35d4bd7addc580050842c844a11575f1"},"description":"Washington D.C., Oct 27, 2014 \/ 02:06 am (CNA\/EWTN News).- In order to halt the abortion of babies diagnosed with Down syndrome, much must be done for education, research, and legislation to help parents choose life, a panel of experts has said. “In a sense, Down syndrome is the canary in the coal mine, it’s the test case of how we in a society will deal with difference in disability,” said Mark Bradford of the Jerome Lejeune Foundation. “Will we welcome individuals into our communities who have genetic differences? Or will we exclude them from our society, marginalize them, push them away, and not allow them to be born?” The March for Life hosted a panel discussion on the theme for the upcoming march “Every Life is Precious,” to discuss the high abortion rate in pregnancies where the unborn child is diagnosed with a disability such as Down syndrome. The event, held Oct. 23, commemorated Down syndrome Awareness Month. According to a report by the Lozier Institute, anywhere from 61 percent to 93 percent of babies in the U.S. prenatally diagnosed with Down syndrome are aborted. However, if parents receive the support and education they need to raise a child with Down syndrome they may be much less likely to terminate the pregnancy. “We really have to do a much better job at communicating to parents the life that they might expect if they bring into the world, or allow to live, a child who has been diagnosed with pre-natal Down syndrome,” Bradford said. According to a report by the Lozier Institute, parents have reported a clear bias from medical professionals against bringing a Down syndrome child to term, but those parents who chose to have the child said they were happy. “Individuals and families living with Down syndrome overwhelmingly report satisfaction with their lives,” the report stated, but since most parents still choose abortion, that “raises critical questions” about how medical professionals deliver the diagnosis. In fact, Bradford added, according to a study “one in four women who had received a pre-natal diagnosis of Down syndrome said that their medical provider was insistent that they terminate the pregnancy.” And most – a rate of 2.5 to 1 -- reported a negative experience when receiving their prenatal diagnosis. “We can see that the medical community is still behind the curve in terms of what parents’ understanding is,” Bradford stated. More funding for medical research is needed, the panel added. As Jerome Lejeune, the French geneticist who discovered the genetic cause of Down syndrome, said of babies with the disorder, “the only way to save them is to cure them.” Yet federal funding for Down Syndrome research at the National Institute of Health is very low compared to funding for other intellectual disabilities, Bradford added. “NIH funding for Down Syndrome research is $19 million a year, which is only about $76 a person,” he estimated. By contrast, he said annual funding for research on cystic fibrosis is about $2,700 per person. “So we have the most common cause of genetic intellectual disability, one of the lowest-funded areas for research in the federal funding portfolio,” he remarked. And much progress has been made with research for the disease, the Lozier report claimed. “Medical research has made incredible strides toward improving the lives of those living with Down syndrome, but even more exciting are advances that have taken place in investigating prenatal therapies to improve birth outcomes,” the report stated. “Success in this particular area of research could have a transformative effect on the decision parents face following a prenatal diagnosis of Down syndrome, a decision that now strongly favors abortion.” Lastly, passing legislation to aid the disabled needs to be a priority as well, the panel insisted. One bill in particular, the Achieving a Better Life Experience Act, has been in the works for eight years but still has not passed Congress. The bill would help disabled persons set up a tax-exempt account to pay for various education and living expenses that would be affected by their disability. In September, the Senate Finance Committee announced it had agreed to move the bill forward. “Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act,\" the committee said Sept. 22 in a statement. \"Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.”  ","breadcrumb":{"@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/2014\/10\/educate-legislate-fund-three-responses-to-down-syndrome\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.patheos.com\/blogs\/catholicnews\/"},{"@type":"ListItem","position":2,"name":"Educate, legislate, fund: three responses to Down syndrome"}]},{"@type":"WebSite","@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/#website","url":"https:\/\/www.patheos.com\/blogs\/catholicnews\/","name":"Catholic News","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.patheos.com\/blogs\/catholicnews\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"},{"@type":"Person","@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/#\/schema\/person\/35d4bd7addc580050842c844a11575f1","name":"CNA Daily News","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/www.patheos.com\/blogs\/catholicnews\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/8f1180c7dca7995d4a997aac72a3a88a?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/8f1180c7dca7995d4a997aac72a3a88a?s=96&d=mm&r=g","caption":"CNA Daily News"},"sameAs":["http:\/\/www.catholicnewsagency.com\/"],"url":"https:\/\/www.patheos.com\/blogs\/catholicnews\/author\/cna-daily-news\/"}]}},"_links":{"self":[{"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/posts\/8539","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/users\/1031"}],"replies":[{"embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/comments?post=8539"}],"version-history":[{"count":0,"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/posts\/8539\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/media?parent=8539"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/categories?post=8539"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/catholicnews\/wp-json\/wp\/v2\/tags?post=8539"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}