By Brian Friedlander from the Cornell Chronicle:
Fetuses with Down syndrome dramatically benefit when their mothers increase
their intake of the nutrient choline during pregnancy and nursing,
report Cornell researchers in the journal Neurobiology of Disease.
Increased choline by moms bolsters brain functions and plays a profound
health role for Down syndrome offspring throughout their lives.
Increased
maternal choline intake improves spatial cognition and attention, and
delays aging-related memory decline in normal laboratory rats. The
present findings with Down syndrome mice indicate that increased
maternal choline consumption may also lessen the impairment of
individuals with Down syndrome and reduce the risk of Alzheimer’s
disease, which is seen in nearly all Down syndrome individuals.
Showing posts with label prenatal. Show all posts
Showing posts with label prenatal. Show all posts
Sunday, September 15, 2013
Friday, August 12, 2011
Largest Prenatal Medical Outreach Campaign about Down Syndrome in US History
from PR.com:
Thanks to generous funding by the National Down Syndrome Society (NDSS) and the Joseph P Kennedy Foundation, last week Lettercase successfully completed the largest and most credible prenatal medical outreach campaign about Down syndrome in the US.
Over the past six months, 10,000 copies of "Understanding a Down Syndrome Diagnosis" have been distributed to legislators, university leaders, Down syndrome community leaders, and medical professionals nationwide, including over 4100 booklets to practicing OB/GYNs and more than 4000 booklets to all genetic counselors and medical geneticists in the country.
The booklets represent a historic agreement between the medical and disability communities because they were created with input from the Down Syndrome Consensus Group, which includes experts from the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Congress, and NDSS.
The booklets have already begun to impact society in the short time since their release. In fact the booklets were featured in the Washington Post, "On Parenting" blog by Allison Wohl, and they have been included as a recommended resource in the published NSGC guidelines on how genetic counselors should communicate a prenatal diagnosis of Down syndrome.
Lettercase CEO and the booklet author, Stephanie Meredith, says, "One expectant mother from Boston who received the Lettercase booklet told us she initially 'felt like she was drowning' after learning about a prenatal Down syndrome diagnosis, but then receiving the booklet felt like she was being 'thrown a lifeline.' These patients learning about a diagnosis are entitled to appropriate support and the up-to-date and balanced information that our booklets offer."
According to Madeleine Will, Director of the NDSS Policy Center, “Even though NDSS, Lettercase, and the Kennedy Foundation have collectively made tremendous strides in the effort to provide prenatal Down syndrome education resources, there is still much work to be done. With more advanced prenatal blood tests on the horizon for 2011 or 2012 and thousands more medical providers who need resources, advocacy for the importance of patient resources and securing additional copies for providers is critical.”
Thanks to generous funding by the National Down Syndrome Society (NDSS) and the Joseph P Kennedy Foundation, last week Lettercase successfully completed the largest and most credible prenatal medical outreach campaign about Down syndrome in the US.
Over the past six months, 10,000 copies of "Understanding a Down Syndrome Diagnosis" have been distributed to legislators, university leaders, Down syndrome community leaders, and medical professionals nationwide, including over 4100 booklets to practicing OB/GYNs and more than 4000 booklets to all genetic counselors and medical geneticists in the country.
The booklets represent a historic agreement between the medical and disability communities because they were created with input from the Down Syndrome Consensus Group, which includes experts from the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Congress, and NDSS.
The booklets have already begun to impact society in the short time since their release. In fact the booklets were featured in the Washington Post, "On Parenting" blog by Allison Wohl, and they have been included as a recommended resource in the published NSGC guidelines on how genetic counselors should communicate a prenatal diagnosis of Down syndrome.
Lettercase CEO and the booklet author, Stephanie Meredith, says, "One expectant mother from Boston who received the Lettercase booklet told us she initially 'felt like she was drowning' after learning about a prenatal Down syndrome diagnosis, but then receiving the booklet felt like she was being 'thrown a lifeline.' These patients learning about a diagnosis are entitled to appropriate support and the up-to-date and balanced information that our booklets offer."
According to Madeleine Will, Director of the NDSS Policy Center, “Even though NDSS, Lettercase, and the Kennedy Foundation have collectively made tremendous strides in the effort to provide prenatal Down syndrome education resources, there is still much work to be done. With more advanced prenatal blood tests on the horizon for 2011 or 2012 and thousands more medical providers who need resources, advocacy for the importance of patient resources and securing additional copies for providers is critical.”
Sunday, May 8, 2011
Prenatal diagnosis booklets distributed to 10,000 professionals
From pr.com:
Lettercase (www.lettercase.org) is pleased to announce that its booklets, "Understanding a Down Syndrome Diagnosis," have been distributed to medical providers nationwide in the largest ever Down syndrome prenatal outreach effort. However, this accomplishment is just the beginning. Additional funding is critical to make booklets available to the more than 60,000 professionals who could be sharing the unexpected and often overwhelming news with expectant parents.
The National Down Syndrome Society (NDSS) and the Kennedy Foundation generously funded the 10,000 booklet distribution for a prenatal outreach effort that Lettercase arranged with the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics (ACMG), graduate programs, and the American College of Obstetricians and Gynecologists (ACOG), but there remain tens of thousands more medical professionals who could benefit from this important resource.
Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.
Lettercase CEO, Stephanie Meredith, says, "Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."
According to Madeleine Will, Director of the NDSS Policy Center in Washington D.C., "current prenatal testing was developed with a 13 million dollar NIH grant in the 1990's; now NIH has granted 2 more million dollars for the next wave of prenatal testing. Yet there has been no matching funding to provide the accurate, up-to date, detailed information about life with Down syndrome that professional recommendations require when delivering a diagnosis. The Lettercase booklets provide that required information about Down syndrome. It is incumbent upon those who fund prenatal testing to also provide funding for this vitally essential educational information; otherwise, prenatal testing does not result in informed decisions but can, and often does, result in discrimination against those with the tested-for condition."
About Lettercase
Lettercase is a Georgia non-profit corporation that provides reliable and up-to-date resources and information about genetic conditions, as well as professional and academic training about disabilities. Lettercase can make experts available for interview.
Lettercase (www.lettercase.org) is pleased to announce that its booklets, "Understanding a Down Syndrome Diagnosis," have been distributed to medical providers nationwide in the largest ever Down syndrome prenatal outreach effort. However, this accomplishment is just the beginning. Additional funding is critical to make booklets available to the more than 60,000 professionals who could be sharing the unexpected and often overwhelming news with expectant parents.
The National Down Syndrome Society (NDSS) and the Kennedy Foundation generously funded the 10,000 booklet distribution for a prenatal outreach effort that Lettercase arranged with the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics (ACMG), graduate programs, and the American College of Obstetricians and Gynecologists (ACOG), but there remain tens of thousands more medical professionals who could benefit from this important resource.
Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.
Lettercase CEO, Stephanie Meredith, says, "Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."
According to Madeleine Will, Director of the NDSS Policy Center in Washington D.C., "current prenatal testing was developed with a 13 million dollar NIH grant in the 1990's; now NIH has granted 2 more million dollars for the next wave of prenatal testing. Yet there has been no matching funding to provide the accurate, up-to date, detailed information about life with Down syndrome that professional recommendations require when delivering a diagnosis. The Lettercase booklets provide that required information about Down syndrome. It is incumbent upon those who fund prenatal testing to also provide funding for this vitally essential educational information; otherwise, prenatal testing does not result in informed decisions but can, and often does, result in discrimination against those with the tested-for condition."
About Lettercase
Lettercase is a Georgia non-profit corporation that provides reliable and up-to-date resources and information about genetic conditions, as well as professional and academic training about disabilities. Lettercase can make experts available for interview.
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