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In many cases, the end of the year gives you time to step back and take stock of the last 12 months. This is when many of us take a hard look at what worked and what did not, complete performance reviews, and formulate plans for the coming year. For me, it is all of those things plus a time when I u...
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Global Down Syndrome Foundation, National Down Syndrome Congress Announce Distribution for Down Syndrome Prenatal Testing Pamphlet

The Global Down Syndrome Foundation and the National Down Syndrome Congress have announced distribution agreements for the hallmark Down Syndrome Prenatal Testing Pamphlet that provides current, accurate information about Down syndrome to pregnant women and families.

The organizations anticipate distributing 25,000 pamphlets in the next year through the pamphlet’s new corresponding website, www.downsyndrometest.org. In the two weeks since the website launched, more than 1,000 pamphlets have been requested and are in the process of being distributed to several states, including California, Michigan, West Virginia, Texas and Florida. These pamphlets will be delivered free of charge by the end of the year, and distributed to pregnancy centers, OBGYN offices, parent support groups and to participants at an upcoming perinatal conference.

In addition to local distribution accessed through the website, the pamphlet will be distributed nationally by Sequenom Center for Molecular MedicineTM (Sequenom CMM), one of the largest prenatal testing laboratories in the United States. Sequenom CMM will provide medical professionals with the pamphlet, and will recommend that those who administer their test offer the pamphlet to patients / expectant parents at the point of testing and diagnosis. In the next year, Sequenom CMM anticipates providing between 75,000 and 100,000 printed copies of the pamphlet to the medical centers and facilities administering the MaterniT21TM PLUS LDT.

“Sequenom CMM has expressed a desire to better understand the Down syndrome community’s concerns regarding prenatal testing, which opened up a discussion for them to distribute our pamphlet,” said David Tolleson, Executive Director of the National Down Syndrome Congress. “We appreciate their input on our pamphlet, and particularly the acknowledgment in their marketing materials that these tests can help a woman or family to ‘prepare medically, emotionally and financially for the birth of a child with special needs.’”

“It is so important to provide a pamphlet to pregnant women that explains both the prenatal testing associated with Down syndrome and facts about the condition,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “Requests for local distribution continue to grow through the website, and coupled with Sequenom CMM’s nationwide footprint, we expect to have a real and positive impact on thousands of pregnant women and their families.”

Dan Ketcherside, Director of Market Development at Sequenom CMM agreed, “Sequenom CMM encourages medical professionals to offer accurate information to pregnant women and their families about the conditions tested for through our products. The Global Down Syndrome Foundation and the National Down Syndrome Congress graciously included our perspective on prenatal testing in their pamphlet with messaging that mirrors the dialogue we’re already having with specialists around the country. We are honored to be a partner for this important educational material.”

The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to monitor advances in prenatal testing. They will also measure the impact of the pamphlet through follow-up surveys and update the pamphlet as appropriate. Sequenom CMM will also contribute to the pamphlet’s utility by surveying medical professionals on a quarterly basis.

The pamphlet format allows for easy updates and distribution. The costs for approved distribution of the pamphlet (printing and shipping) will be incurred by Sequenom CMM, the Global Down Syndrome Foundation and the National Down Syndrome Congress. There is no financial benefit or incentive associated with the distribution agreements.

For free downloads of the pamphlet or to learn more, visit www.downsyndrometest.org.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show -- the single-largest annual fundraiser benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

About the National Down Syndrome Congress

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them. A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights. Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and its outreach to individuals from diverse backgrounds.

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