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October 2013
in this issue
Down Syndrome Awareness Month
Gearing Up for Indianapolis
DS-Connect: Down Syndrome Research Registry
HealthMeet Webinar Archives
And Another Thing or Two
Down Syndrome Awareness Month!
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October as Down Syndrome Awareness Month has been recognized for close to 30 years now. Most affiliate parent organizations hold their awareness and fundraising walks (Buddy Walks, Step Up Walks) in October in honor of this month. Coincidentally, there are a whole lot of high schools holding their Homecoming celebrations in October, and every year we see more and more stories of students with Down syndrome becoming Homecoming Royalty.

 

Here is just a sample of this fall's stories:  

 

West Genesee High School, Andrew Bowman, Homecoming King 

 

West Orange High, Semone Adkins and Travjuan Hunter, Queen and King

 

Whitmer High School, Bethany Wissler, Homecoming Queen 

 

What does it all mean? Before Public Law 94-142 was passed in 1975, (that's the Education for All Handicapped Children's Act, which would later become IDEA), children with Down syndrome were not guaranteed an education in our public schools. With so little opportunity for meaningful interaction between students without disabilities and students with Down syndrome, these stories would not have been possible.  

 

Today, children with Down syndrome are most often educated in their neighborhood schools, alongside their peers without disabilities. Students learn from an early age that Down syndrome is just a part of who a person is. They learn that all people have unique personalities, strengths and weaknesses, likes and dislikes. They learn that people with Down syndrome truly are More Alike Than Different.  

 

 

We're proud to watch this generation of school children grow up with a different world view. One that includes students with Down syndrome as part of the whole community. We're confident that these young people will grow up with an entirely different attitude about those with Down syndrome, and since they are our future parents, neighbors, medical professionals, and employers, we're sure glad to see it happen.

The NDSC Convention is Heading to Indianapolis  

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We are always proud to bring the best speakers to our convention each year. We bet that many of you have a favorite speaker that we don't know about. Maybe you are that speaker! We look for experts in topics that cover the lifespan of individuals with Down syndrome, like: health and medical concerns (including therapies); education (from pre-school to post-secondary); transition; employment; living options; friendships and social relationships; advocacy and systems change; speech and communication; aging; positive behavior support; and much more. You can complete workshop proposals on our convention website now, so please pass this information along!    

 

Each year at our convention, the NDSC presents awards to the "cream of the crop" in the world of Down syndrome. From researchers to educators to media, it's time to submit nominations for our annual awards. Please visit our website to get all the details on our award criteria, and make a nomination for that outstanding person or organization who deserves recognition.  

DS-Connect, Down Syndrome Registry  

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Have you checked into DS-Connect, the Down syndrome registry site yet? If not, we hope you'll consider logging in and including your family's information. Patients have full control over what information they choose to share, and can withdraw whenever they wish. 
 
Read more information here


Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users' names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner.

 

If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan.  

HealthMeet Webinar: "Women Be Healthy" 

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In this upcoming webinar, Susan Parish, Director of the Lurie Institute for Disability Policy at Brandeis University, will be reviewing the Women Be Healthy project and test results. Women Be Healthy offers classes and resources for women with intellectual disabilities and their health professionals.  These resources help women learn how to better express their health concerns to their physician and to be more prepared and informed about their health and body. Susan will discuss the prevalence of cervical and breast cancer screening in women with ID and why it is so important.  Barriers to this type of care will also be given along with information regarding the significant racial disparities in mammography for women with ID.   laptop-glasses-girl.jpg  

  

Visit the HealthMeet website to see the complete list of archived webinars, click on the topic you are interested in, and follow the directions. They are there for you whenever you have time to watch and listen!   

And Another Thing or Two...
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The NDSC has is making some exciting changes at our Center in Atlanta, Georgia! We have a new Director of Development, Rebecca Davis, who joined the team just this week. Tamara Pursley has started working as our Resource Specialist, replacing Jennifer Carroll, who will now serve as our Affiliate Director. Sue Joe has taken on a new position at NDSC, and will serve as Communication Director.  

All of these exciting changes will mean an improved focus on meeting the needs of our members and in providing information all across the Down syndrome community.  

Contact Information
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phone: 800-232-6372/770-604-9500; email: info@ndsccenter.org
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