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Organizations, sites, books, publications and links to help on your journey with Down syndrome. Members...be sure to scroll down to the DSAV library resources |
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What exactly is Down syndrome?
Down syndrome occurs in one out of every 733 live births, and more than 350,000 people in the U.S. have this genetic condition. One of the most frequently occurring chromosomal abnormalities, Down syndrome affects people of all ages, races and economic levels. The most common form of Down syndrome is known as Trisomy 21. Individuals with Trisomy 21 have 47 chromosomes instead of the usual 46 in each of their cells. The condition results from an error in cell division called nondisjunction. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This error in cell division is responsible for 95 percent of all cases of Down syndrome. Today, individuals with Down syndrome are active participants in the educational, vocational, social and recreational aspects of our communities. In fact, there are more opportunities than ever before for individuals with Down syndrome to develop their abilities, discover their talents and realize their dreams. For example, more teens and adults with Down syndrome each year are graduating from high school, going to college, finding employment and living independently. To ensure optimum health for those with Down syndrome, click here for Healthcare Guidelines for children & adults with Down syndrome in an adobe format or click here DS-Health for an excellent Down syndrome health resource site. Medical Guidelines Chart - Birth - Age 12 Medical Guidelines Chart - Age 13 to adult
Just click on the links below to go to these web sites & stories. Erin Gannon Story - WQED - This is a wonderful news story on the life and accomplishments of a wonderful young lady with Down syndrome in Pittsburgh, PA. Aired December 11, 2007.
National Down Syndrome Congress - The vision of the NDSC is a world with equal rights and opportunities for people with Down syndrome. It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. Down Syndrome Society - The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.
Down Syndrome Caucus - Congresswoman Cathy McMorris Rodgers of Washington state is the mother of a son with Down syndrome. She was instrumental in forming the Down Syndrome Caucus. ODAN - The Ohio Down Syndrome Advocacy Network - DSAV is a member of ODAN, a group comprised of Down syndrome associations across the state. ODAN works to ensure all counties in Ohio have Ds materials and support available to families as well as working to broaden the support and advocacy for those with Ds in our state. For more information contact DSAV. Click on this link to view the NDSS Dreams video: DREAMS |
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MetroHealth Medical Center in Cleveland is currently looking for children with Down syndrome to participate in a clinical study. Click here Clinical Study info to read about the research. Please be aware that the Down Syndrome Association of the Valley does not endorse any clinical trials, but wants to make the opportunity available to our membership. For more information you should contact MetroHealth at 216-778-7676
These are great video resources produced by professional videographer, Will Schermerhorn of Blueberry Shoes productions. Down syndrome films Super Duper Inc. is a great web resource site for parents and educators. They offer a number of products and FREE resources. We have included links a few of these handouts below. Periodically, we will add or change the handouts available. Reading Foundation Birth-Presschool Sensory Integration in the Classroom
Below are two links to the text of remarks by Patricia E. Bauer about prenatal screening for Down syndrome. One she presented at a general session of the fall conference of the American College of Osteopathic Obstetricians and Gynecologists(ACOG) in St. Louis, Missouri Sept. 27, 2007. The other is her keynote speech at the 35th annual convention for the National Down Syndrome Congress in August 2007. Both are quite long, but well worth the read. To read Patricia's remarks to ACOG click the link: Tell them it's not so bad To read her keynote speech at the National Down Syndrome Congress click here: Stand Tall
DSAV Library Resources The following items are available to borrow from the DSAV resource library. To borrow something, please e-mail us and arrangements will be made to get the item to you. Gross Motor Skills in Children with Down Syndrome - Patricia Winders, PT Fine Motor Skills for Children with Down Syndrome - Maryanne Bruni, BScOT Babies with Down Syndrome - A New Parents' Guide- Karen Stray-Gundersen Understanding How Children with Down Syndrome Learn - Susan Peoples Targeted Therapies Otitis Media and Otitis Externa - Bluestone, Casselbrant, Dohar A Parent's Guide to Ear Tubes - Richard Rosenfeld Learning Through Play a resource manual for teachers and Parents (4-6 months) - Fewwll & Vadasy Learning Through Play a resource manual for teachers and Parents (7-9 months) - Fewwll & Vadasy Leaning Through Play a resource manual for teachers and Parents (10-12 months) - Fewwll & Vadasy Down Syndrome - The first 18 months VHS Tape - Will Schermerhorn Gifts - Kathryn Lynard Soper - The purpose of Gifts is to show the world that the life of a child with Down syndrome is something to celebrate.
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