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Uniting Unique People in a Unique World

International Mosaic Down Syndrome Association

PO Box 321, Stow, MA 01775

1-855-IMDSA-21

                                                                                                                                             

For Immediate Release

Contact: Brandy Snow

International Mosaic Down Syndrome

404-735-4279 or PR@IMDSA.org

International Mosaic Down Syndrome Association Position Related to Recent Lawsuit in Oregon

Trenton, OH (March 10, 2012)  There are recent news reports of a couple suing a hospital for failing to prenatally diagnose their child with a form of Down syndrome called "mosaicism." Mosaic Down syndrome is a condition where not all of the cells in the individual have a triplicate of the 21st Chromosome, only some do. The impact of this extra chromosomal material has varying effects depending on how prevalent it is. We understand how shocking a diagnosis can be and the concerns that families face in wondering about this life that they did not expect. IMDSA does not know and cannot comment on the reasons for the parents choosing to seek legal redress. Many parents, in addition to feeling shocked, are dismayed that testing they sought was reported with inaccurate results. Further, there is an expectation that a life with Down syndrome will be more challenging, and more expensive. This is understandable as there are challenges and expenses with raising a child with special needs. However, professional ethical commentary on prenatal testing counsels that none of us can predict what impact any of our children will have, regardless of the number of chromosomes they have. Moreover, while some have argued that in hard dollars and cents, a life with Down syndrome has greater medical costs, the IMDSA questions the rigor of such analyses and whether they take into account other factors that are not as easily quantified as medical bills. For instance, the most recent research finds that 99 percent of individuals with Down syndrome report that they are happy with their lives and that over 88 percent of siblings consider themselves better people because they have a brother or sister with Down syndrome. It is unlikely these same percentages would be reported by individuals without a connection to someone with an extra copy of the 21st Chromosome in some or all of their cells. It is unknown and unknowable whether this child will be considered a burden, but the most recent research suggests that the odds are he or she will not be. As our mission states, IMDSA is designed to support any family or individual whose life has been affected by mosaic Down syndrome by continuously pursuing research opportunities and increasing awareness in the medical, educational, and public communities throughout the world. We stand ready to support this family and offer any support to the hospital in order to ensure accurate information about mosaic Down syndrome is provided to all families undergoing prenatal genetic testing.



For Immediate Release

Contact: Brandy Snow

International Mosaic Down Syndrome

404-735-4279 or PR@IMDSA.org

International Mosaic Down Syndrome Association Announces Joint Advocacy With Three National Down Syndrome Organizations

Trenton, OH (January 24, 2012) International Mosaic Down Syndrome Association announced its collaborative intentions with National Down Syndrome Congress, the National Down Syndrome Society, and Global Down Syndrome Foundation.

To formalize the four organizations’ decision to join forces in respect to government advocacy for the Down syndrome community, a letter was signed by the organization leaders. International Mosaic Down Syndrome Association specifically maintains focus on increasing awareness in the medical, educational, and public communities throughout the world and encourages research in all areas of mosaic Down syndrome.

International Mosaic Down Syndrome Association hopes to use this as an opportunity to maintain a presence as an advocate in the Down syndrome community and to bridge the gaps between national and international Down syndrome affiliates.

About International Mosaic Down Syndrome Association

In 2002, International Mosaic Down Syndrome Association was registered in the state of Texas as a 501c(3) non-profit organization. Since that time, International Mosaic Down Syndrome operates and is accessible to the mosaic Down syndrome families via their website, web-based support groups, monthly newsletter, and biennial conferences. The organization continues to raise awareness about this rare genetic disorder and supports ongoing research as well as providing support and assistance to families affected by mosaic Down syndrome in the United States and across the globe.

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