From Austin To Krakow

Fri, March 04, 2011 10:01 AM | Anonymous member (Administrator)

Representatives of Austin's Down Syndrome Association of Central Texas traveled to Poland in September to attend the first-ever Down syndrome conference in Krakow. "Down Syndrome: In the Direction of Change" was organized by GRAAL (Krakow's DS  organization).


The invitation came after a young man in Poland, Rafal Ryba, made the initial request to add Polish subtitles to DSACT's "Down Syndrome in the 21stCentury" video. Continued correspondence not only included an invitation, but the funding  to cover DSACT's travel expenses. Eight from DSACT made the trip including Suzanne Shepherd, DSACT President and Don Rettberg, Jr., who appeared in the video. Also  making the trip was Dr. Brian Skotko.


The entourage visited a preschool and presented at the conference attended by two hundred parents, educators, physicians and even politicians assembled for the first DS conference in Poland to include speakers from outside the country. Don Rettberg, Jr. delivered the keynote address to the plenary session and Suzanne Shepherd spoke on DSACT's programs and services.  Shepherd explained that she was surprised by the Warsaw Down Syndrome Organization's leader who told the audience that some form of integration might be possible in the U.S., but not in Poland. "While the American lady might think that it's working in Texas, this is in her imagination," she said. "Polish society would never be ready to include people with disabilities."


However, breakout sessions brought positive feedback and DSACT has been invited back again for the next conference in Warsaw, Poland, in October of 2011. "And so a 7-minute video has helped build a bridge from Austin to Krakow," said Shepherd, "allowing DSACT and GRALL to share tools and work together to improve the lives of people with DS in Central Texas and Poland. What other doors this video may open

- I can't even guess."



Make Connections at DSAIA Conference


Bringing Down syndrome organizations from all over the country together to share, learn and connect, the annual DSAIA Leadership Conference can make a true difference in outcomes for your organization.  "I always come away with great ideas for new  programs or simple ideas on how to enhance our

current programs and events," said Lynn Neidigh of DSG of the Ozarks.  "While I was at the conference I got lots of ideas, but it was not until I made a personal phone call to Alyson Edwards at DSA of Memphis & Mid-South that we solidified our "Stage of PossAbilities".  Making that personal connection and feeling comfortable to pick up the phone and talk out the details made all the difference in the world."


"I attended the AIA conference for the first time last year and was amazed at the wealth of information that I received from all of the different presenters," said Priscilla Burnett of the Red River Valley Down Syndrome Society. "There was so much, in fact, that I came home trying to share all the information with my husband and he said, 'You learned all that in just a few days?'"  If you are new to the conference, let us know about it  []so that we can help you maximize your experience.


To help with baggage fees (and to save room in your luggage for your cowboy boots), we recommend groups submit materials to the Repository that they would normally bring to the conference to display. Groups (members and  non-members alike) can submit templates, forms, program ideas, marketing materials etc., to the DSAIA Repository by contacting us at Only a few days remain to take advantage of the discount through Early Bird Registration. After January 21st, rates will go up $100.  Remember, your registration also includes your hotel room for three nights, breakfast/lunch/snacks for the entire conference, and a thumb drive loaded with all the presentations.


Watch your email inbox for more updates on the conference activities including Dine-Around options for Friday night.  Start your conversations with other attendees before you ever arrive in Big D by visiting DSAIA's FaceBook page.



DSAIA Welcomes New Members


DSAIA welcomes ten new organizations into our membership so far in 2011:


Designer Genes of North Dakota

Down Syndrome Aim High Resource Center

Down Syndrome Association of Hampton Roads

Down Syndrome Association of Jacksonville

Down Syndrome Association of Minnesota

Down Syndrome Association of Southern Oregon

Global Down Syndrome Foundation

Gold Coast Down Syndrome Organization

International Mosaic Down Syndrome Association


Membership brings with it more than just conference discounts. From full access to the DSAIA Repository to VIP Discount Purchase Programs to monthly training webinars, groups are finding real value in joining. For more information about membership,  contact DSAIA [] today.



DSAIA Introduces Two New VIP Programs


Insurance Package Proposal


Down Syndrome Affiliates in Action has partnered with Johnston Fiss Insurance to  assist in the review and purchase of insurance products for our member organizations. No matter how large or small your group, insurance is sure to be a top priority.


Through this VIP Program, Johnston Fiss Insurance will offer a no-obligation review of your current insurance product. In addition, this partnership has produced an  insurance package proposal through two respected insurance companies especially  for DSAIA members. Download the informational flyer for more details.


Event Fundraising Software


EZ Event Solutions has been providing Online Fundraising Site services forthe last four years and is proud to offer these services to DSAIA members at a 10% discount.


Their online system was built specifically to provide the services for events that require team pages and team fundraising efforts. To find out more about how EZ Event Solutions can help your organization's event be a success, download the EZ Event Solutions VIP Flyer.



Birth Rate Incidence Increases


The Centers for Disease Control and Prevention (CDC) and the National Birth Defects Prevention Network have published a new study updating the national prevalence estimates for selected birth defects in the United States from 2004-2006. Down syndrome was the most common condition in this study.

The estimated national prevalence was 14.47 per 10,000 live births. This means that there are about 6,000 diagnoses of Down syndrome each year in the United States. Based on the latest estimate, 1 in every 691 births is a baby with Down syndrome.


DSAIA members should note that Repository documents may need to be updated with the new statistics. If your organization is interested in learning more about prenatal outreach, please take a look at our 2011 DSAIA Conference Breakout Session list. There are several options from which to choose throughout the event. The Urgency of Medical Outreach, a webinar which will address current research and resources on the topic, is scheduled for Thursday, January 27, 2011 at 12n Central/1p Eastern.

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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