E-News Header 1     
 March 2013
in this issue
Celebrate World Down Syndrome Day
Board Members Support the NDSC in Big Ways
Survey to Help Families
World Down Syndrome Day
Informational Webinars
And Another Thing or Two
World Down Syndrome Day 2013
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Next Thursday, March 21st, the Down syndrome community will once again celebrate World Down Syndrome Day. At the United Nations, a conference will be held for WDSD 2012 the second year, this time emphasizing employment for people with DS, titled Right to Work. All around the world, parents, families, and Down syndrome organizations will hold dances, workshops, dinners and more. You're probably planning to take part in an event yourself.

 

Let's ask ourselves, what else can we do to broaden the scope - to get the larger community to celebrate with us? How can we get the rest of the world to truly see that people with Down syndrome are "more alike than different"? What can we say to impress upon those outside of our friends and families that people with Down syndrome are valuable members of their communities, just the way they are

 

We invite you to really celebrate next Thursday; make it a "holiday" to enjoy with your friends. Send cookies or cupcakes to school with your child to share with her class. Invite your colleagues to join you for lunch in celebration of World Down Syndrome Day. Send an email to your congressional representative and tell him about Down syndrome. If "lots of socks" is your thing, wear them! Invite neighbors to join you for a drink after work, and toast people with Down syndrome all around the world. (Send us your ideas and photos, so we can share them, too!)

 

Of course the broadest reach is probably through your social media connections. Next week, post the World Down Syndrome Day logo and ask your friends to share it. Post a picture of the person you love with Down syndrome on your profile, and tell your story to the world. Follow other organizations celebrating WDSD, and share those messages on your page, too. Use #WorldDownSyndromeDay when you tweet, and get that hashtag trending!

Running in Support of the NDSC
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NDSC board member Bret Bowerman and his wife Courtney are running the New York City half marathon (this weekend) for the second year in support of the NDSC, and in honor of their daughter Ellie. Board member Shawn Hardister is running the Boston Marathon in support of his son Matthew, with funds raised going to the NDSC.  We are thrilled to have such committed board members, who support our organization with their time and expertise all year long - even "taking it to the streets" for the NDSC.

 

You can read more about both of their fundraising campaigns below. We would, of course, be honored if you chose to support their fundraising efforts with a donation, but also want you to know this is something any NDSC supporter can do as part of their race routine. Just call us at 800-232-6372, and we'll give you the information you need to set it up for your next run!

 

Ellie Bowerman

The Bowerman's Story: Two years ago Bret joined the board of the National Down Syndrome Congress.  The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome. The proceeds from this fundraiser will go to support the NDSC's important and ground-breaking work.
 
Courtney and Bret Bowerman's daughter, Ellie, turned four years old a few months ago.  Every day, they are reminded of how hard she works.  On an average week, Ellie spends 3 hours doing physical therapy, 4 hours in occupational therapy and 5 hours on speech therapy on top of gym class, swimming lessons, and school, not to mention play dates with friends.  Ellie takes it all in stride and never gives up.  Courtney and Bret say that Ellie is "our inspiration." They are running the New York half-marathon in honor of Ellie's spirit and for all the children with Down syndrome who they believe deserve greater access to resources and support.  Their fundraising efforts are dedicated to supporting this belief.

 

Follow this link to join the Bowerman's in their support of the NDSC.  

 

The Hardister's Story:  

Little did Pam and Shawn know when Matthew entered their lives almost 20 years ago, that they were in for a wonderful adventure.  That's certainly not what they thought when they were given a diagnosis of Down syndrome. Pam and Shawn weren't sure where to turn, until they found theMatthew Hardister National Down Syndrome Congress.  In the NDSC, they found a national organization that became for them an extended family - offering support, advice and encouragement. They believe that many lives have been improved by the NDSC - through advocacy at a national level, through current information and sound advice that is free to all who seek it, and through the annual convention that has been unofficially dubbed the "NDSC Giant Family Reunion".

 

Matthew is the joy of their lives - and Down syndrome is a wonderful and lovely part of who he is.  Matthew's twin sisters have also benefited, and have great hearts and maturity because of it. Please join Pam and Shawn in supporting the NDSC.  Your donation keeps that light of hope shining bright for so many new and expectant parents, as well as to people with Down syndrome throughout each of the stages of their lives!

 

Follow this link to support Shawn and the NDSC.

Research to Help Families 

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Ann Turnbull, co-director of the renowned Beach Center on Disability at the University of Kansas, has been working with an international research team to develop an online survey that families can use to identify and prioritize their needs. The intention is for this survey to be helpful to family-directed organizations, special education early intervention programs, and human service organizations focusing on family support. You can help in this project by taking part in the survey.

 

If you are the parent or primary caregiver of an individual with Down syndrome from birth to age 21, click here for more information and to take the survey. (Thank you in advance for your participation!)

Do you have a Toys "R" Us Model at Your House?
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ToysRUs ModelsEach year, Toys "R" Us publishes a "differently-abled" toy guide, which is full of beautiful children with Down syndrome and other disabilities. Here's your chance to submit photos of your child for consideration!

 

Read all the information here, and fill out a casting form at this link. Children must be between the ages of 12 months and 10 years, and you must be able to travel to New York for the photo shoot. The deadline to submit your information and child's photos is April 19th. Good luck!

 

HealthMeet Webinars
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The ArcNDSC is a partner with The Arc of the United States in their HealthMeet™ program. Not only can you register to take part in free and informative webinars as they happen, you can also go back and listen to webinars in the archive. (Visit the website for complete information.)

 

On Wednesday, March 20, you can take part in "Putting Nutrition on Your Radar", where presenter Judith Dodd will provide tips on food selection and guidelines to help make grocery shopping healthier and easier. She'll also supply resources to healthy eating and nutrition. Then on April 3rd, you can look forward to "Practice without Pressure", an organization that helps individuals with intellectual disabilities learn the procedures and common instruments used during routine doctor/dentist visits. This program helps reduce stress and anxiety and makes receiving healthcare easier for everyone. 

 

(HealthMeet™ is a project of The Arc, funded by a cooperative agreement with the Centers for Disease Control and Prevention and the National Center on Birth Defects and Developmental DisabilitiesHealthMeet™ will provide training and education for individuals, their families, direct service professionals, medical providers, and medical students and will raise public awareness of health issues that impact people with intellectual disabilities across the country.)

And Another Thing or Two...
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1. Attention Affiliate Leaders: It's time to submit your proposal for this year's Global Down Syndrome Educational Grant. The request for proposals is now available on our website. Click here for more information

2. Have you registered for our 41st annual convention yet? What are you waiting for? Don't miss your chance to take the best Causecation of the year! We'll be Taking our Convention a Mile High, July 19-21, 2013!

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