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The Down Syndrome Guild of Greater Kansas City is a 501 c 3 nonprofit organization whose mission is to provide support and resources for individuals with Down syndrome and their families. DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.
We welcome expectant parents to our organization and hope you will contact us to offer you support. Receiving a prenatal diagnosis that your baby will have Down syndrome can be overwhelming. We have compiled some resources to help you make an informed decision regarding your pregnancy.
The Light at the End of the Tunnel brochure comprises stories from other prenatally diagnosed couples so you can learn what information was helpful to them. Watch a video designed for expectant parents seeking more information. You may also wish to visit the Brighter Tomorrows or National Down Syndrome Congress expectant parent websites to learn more. Watch a video to learn more about adoptions of children with Down syndrome.
Please read DSG's award winning New Beginnings Parent Magazine for inspiration and guidance on your journey. You may also enjoy reading a great new parent guide disseminated by the Down Syndrome Association of the UK.
DSG invites you to learn more about Down syndrome, our programs and services and to get involved. DSG is an organization that supports self-advocates, families, educators and healthcare professionals. Be sure to review the DSG Brochure our 2007 annual report and our most recent Connections newsletter.
DSG began working with CBS Evening News in February of 2008 on a story regarding prenatal testing and Down syndrome diagnosis. Visit the links below to watch this informative piece which highlights what some couples experience when receiving a prenatal diagnosis.
http://www.cbsnews.com/video/watch/?id=4437874n
http://www.cbsnews.com/video/watch/?id=4437975n
http://www.cbsnews.com/video/watch/?id=4437235n
http://www.cbsnews.com/stories/2008/09/10/eveningnews/main4437797.shtml
Congress passed SB1810 on Thursday September 25th which will require physicians to provide accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. Read a great article by Pat Bauer which highlights the bi-partisan legislation strongly advocated for by many Down syndrome organizations.
Kansas City hosted one of the largest celebrations of Down syndrome in that nation on Saturday, October 18th at Arrowhead Stadium. We welcomed 300 teams comprised of 7,000 walkers who helped raise over $455,000 to support the mission of the DSG. We extend our sincere thanks to every walker, donor, sponsor, volunteer, and committee member who made this such a fantastic event.
Visit this link to take an online survey written for a Master's thesis project, which hopes to construct practice guidelines for providing information to new and expectant parents receiving a diagnosis of Down syndrome. The survey is open until November 30th. The study's author says:
"This study combines the complementary perspectives of parents and Genetic Counselors (professionals trained in clinical genetics and counseling skills) for the construction of guidelines to ensure that the first information parents receive about their child's diagnosis is balanced, accurate, and consistent. Your involvement is extremely valuable to healthcare professionals involved in distributing information and resources and those involved in the care of individuals with Down syndrome and their families."
The Down Syndrome Guild of Greater Kansas City is partnering with eReadingPro to bring you an amazing opportunity! The eReadingPro system is based on the whole word approach to reading using flash cards. It offers parents and educators the TOOLS that have been missing, fully supporting the existing research of how children with Down syndrome (visual learners) learn to read.
By following a detailed progression from single words to couplets, phrases, sentences and finally books, this hands-on, proven system provides a new alternative to teaching reading to visual learners. Using this method with children of all ages not only teaches reading, but also encourages speech development, and use of proper grammatical structure when communicating. By investing just ten minutes a day, this program can be used to teach any child to read.
With every purchase of an eReadingPro product through our website, the DSG will earn funds. It is as easy as that! Help your child learn to read while helping the DSG.
The DSG was recognized for excellence in advocacy and dedicated service to families and for support of the NDSC. The following is an excerpt of what was shared about the DSG with those in attendance at the banquet: “ The DSG boasts one of the nation’s most dynamic and comprehensive regional programs. Among their many accomplishments they hold one of the country’s largest Buddy Walks each year. They have developed a groundbreaking program, Parents and Schools in Partnership, which provides positive support and accurate information for area educators. The DSG is also responsible for creating the Affiliates in Action conference to meet the needs of connecting Down syndrome parent group leaders across the country."
DSG hosted a leadership summit for Down syndrome parent group leaders across the United States in Scottsdale, Arizona February 21-24, 2008. The Affiliates in Action weekend promotes interaction, sharing of resources and collaboration between groups who share similar missions and visions for the future of all people with Down syndrome. The weekend is intended for executive directors and board members of parent groups who are interested in growing their organizations and sharing their wealth of knowledge with other leaders.
DSG hosted 175 leaders from 63 groups representing 32 states. Feedback from the conference was overwhelmingly positive with attendees stating how vital the collaboration is to the advancement of the Down syndrome movement. DSG extends our sincere thanks to the Affilaites in Action planning committee who worked tirelessly for a year to make the conference a success. We also extend our thanks to our conference sponsors: National Down Syndrome Society, National Down Syndrome Congress, Woodbine House, Down Syndrome Association of San Antonio, DS Network, Dads Appreciating Down Syndrome and Sharing Down Syndrome. Their financial support allowed DSG to keep registration costs affordable for attendees.
DSG will host the 2009 Affiliates in Action Conference in Washington DC in 2009. The program will change to add a day of lobbying on Capitol Hill so our legislators will become more knowledgable about Down syndrome and the issues our members face on a daily basis. Visit www.dsaia.org to learn more.
Watch a Today Show segment with self advocate Karen Gaffney and her parents.
View a great commercial produced by The Foundation for a Better Life regarding a young woman with Down syndrome.
Learn about NASCAR Racer David Ragan's older brother who has Down syndrome and is an inspiration to the whole pit crew.
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