Our Newsletter

  • Tue, August 30, 2011 3:29 PM | Deanna Tharpe (Administrator)
    Group Donates iPads to 21 Families


    Using technology for functional and education purposes with individuals with Down syndrome has become a hot topic, but one DSAIA member is doing more than talking.  The Down Syndrome Association of the Valley (DSAV) just donated iPads to 21 of its members with Down syndrome.  The idea came about when DSAV received a $5,000 grant from Ronald McDonald House to be used in their LAMP ipad story(Literacy Arts & Math) Program.  "We saw an article on how iPads were being used to help children with special needs," explained Kelly Donadio, co-founder of DSAV, "and knew it was a great fit." 

    The manager of the nearest Apple store was excited to help with the project.  The group created an application and invited their members to apply for one of the initial 14 iPads, with the stipulation being that they would commit to use it for academic purposes.  After 18 applications came in, DSAV's leadership allocated more money to the project.  The total number of iPads given out was 21.  "It is just a coincidence," said Donadio, "we never planned on that number." 


    Members ranging in age from 3 to 21 are using their new iPads in a number of ways.  While younger recipients are using learning apps, a 21-year-old recipient is making it a more integral part of his life.  "He used a 3-ring binder for keeping his schedule and such, but now he is in the process of converting it all to the iPad," Kelly told us.  "And he is also using it socially to connect with his siblings who are away at college."  


    Trio Tours to Spread the Word  


    On May 9, Waynesburg University students K Scarry (from Herndon, Virginia), Sarah Blais (from Attleboro, Massachusetts) and Sam Civitate (from Pittsburgh, Pennsylvania) began a 75-day summer road trip, crisscrossing 35 states to promote the Spread the Word to End the Word campaign and advocate for full inclusion for individuals with intellectual and developmental disabilities (IDD). 


    During their journey, K and Sarah will offer presentations on

    STW Tour
    The STW Tour visited the DSA of Memphis recently on their road trip.

    the need for an inclusive society to a variety of groups, including students and campers, Boy Scouts, religious organizations, government officials, and community leaders.  They hope to educate their audiences about the innumerable talents and abilities people with IDD possess, and teach them to see their peers with disabilities the same way they do - as classmates, as colleagues, as friends, and most importantly, as equals. 


    Additional information about the campaign, including instructions on how to take the pledge, is available at  For a complete itinerary of the tour, visit the STW website.

    DSAIA Member Shares Amazing Video with DS Community


    The Down Syndrome Guild of Greater Kansas City offered an amazing resource to other DS groups this past week.  The group posted a video which chronicles one family's journey before, during and after heart surgery. A local photographer was granted permission to go into the surgical suite to photograph the entire procedure start to finish. Parent reactions and post surgery follow up are compiled into a photo video montage. The award-winning video is being shown in some children's hospitals.  Although, some images are graphic, they are all tastefully done.

    This is a stressful time for parents and the goal of the video was that some anxiety may be alleviated if they can view the process from start to finish. The group is pleased to share this link with their affiliate friends as they think many of your members could also benefit from viewing the video. 

    VIP Programs Save Time & Money For Your Awareness Event 


    As your organization plans your fall awareness event, let DSAIA's VIP Tools assist in your efforts. 

    Event Registration.  Looking for an easy and effective online registration program?  EZ Event Solutions has been providing Online Fundraising Site services for the last four years and is proud to offer these services to DSAIA members at a 10% discount.  For a complete detail of rates and services, download the flyer.


    Buddy Walk MemphisT-Shirt Discounts.  DSAIA has partnered with Rule4 to offer our members incredibly low prices on quality screenprinted T-shirts.  This offer is a great way to save on your event costs with prices as low as $2.60 per shirt!  Find out more about colors and pricing by downloading the informational flyer  (complete with price chart).


    Webinars.  You'll find easy-to-implement ideas to improve the effectiveness of your awareness walk in DSAIA's Walk the Walk webinar.  Explore other informative webinars like the Six in Sixty Series and Creating Powerhouse Publications in the Webinar Archive.


  • Sun, May 01, 2011 10:35 AM | Deanna Tharpe (Administrator)
    Several inquiries that we would like to respond to have been forwarded to DSAIA since our 2012 conference announcement.  Our board voted to purposefully align our conference dates with the NDSS Buddy Walk on Washington to be responsive to our members and to alleviate travel or financial strains on affiliates, thereby allowing them to have representatives at both important events. Questions have been forwarded which indicate a misconception that DSAIA is associated with or endorses one walk brand over another. Nothing could be further from the truth. DSAIA has no vote or voice in our member's board rooms and we support our members regardless of what brand they choose to utilize for their walks.

    is committed to helping affiliates maximize their operational capacity through cutting edge programs, best practices in non-profit management and effective fundraising initiatives. We seek to provide our members with tools and resources to grow their walks and make them more effective in promoting awareness while increasing dollars raised. Our hope is that this statement will alleviate any confusion or misconceptions moving forward. Feel free to contact DSAIA should you have any questions.
  • Sun, May 01, 2011 10:34 AM | Deanna Tharpe (Administrator)

    Affiliates nationwide are working with Lettercase to distribute complimentary copies of "Understanding a Down Syndrome Diagnosis" to obstetric medical providers at district American Congress of Obstetrics and Gynecology conferences across the country. The complimentary booklets are funded through a generous grant by the National Down Syndrome Society and the Kennedy Foundation.

    Watch an informative presentation on the ethics of prenatal testing which features Dr. Brian Skotko, Patricia Bauer and Mark Leach.

    Watch an informative presentation on the ethics of prenatal testing which features Dr. Brian Skotko, Patricia Bauer and Mark Leach.

    DSG of Greater Kansas City is collaborating with the DSA of Memphis, DSA of Central Oklahoma, Down Syndrome Society of Wichita, and DSA for Families to staff an exhibit booth at the ACOG District VII Conference in Kansas City, MO. The DSA of Central Florida will lead affiliates providing a booth at the District IV conference in Naples, Florida, and the DSA of Central Texas and DSA of Houston will host a booth at the District XI conference in Plano, TX. More affiliates from other districts are also expected to join the effort. A webinar for training exhibitor volunteers will be offered prior to the conferences. Trained parents and self advocates will be working at the booths to hand out local resources and the medically approved gold-standard Lettercase booklets to provide accurate information on the realities of life with Down syndrome.

    For more information about ACOG district conferences, visit:, and to find out which ACOG district covers your area, go to: If you would like to participate in this effort, please contact Stephanie Meredith at

  • Sun, May 01, 2011 10:31 AM | Deanna Tharpe (Administrator)

    The Down Syndrome Association of San Antonio found a great awareness tool at an unlikely location:  the local supermarket.  DSASA partnered with H-E-B supermarkets to produce special recyclable bags for customers.  The bags featured the artwork of Natalia Diaz, a10 year old with Down syndrome, and went on sale in March.  H-E-B donates 10% of the profits from the sale of the bags ($1.50 each) to DSASA.  Natalia, who has Down syndrome, submitted her artwork to a contest held by the DSASA that asked those with Down syndrome to submit a drawing with a Texas, Spring or Fiesta theme. From 35 entries, Natalia's drawing was chosen as the clear winner.


    "These bags sold out in a week," said Terri Mauldin, DSASA Executive Director.  "The good news is they are going to produce 50,000 more (it was 20,000 the first time) and sell them during the month of October for Down Syndrome Awareness Month."  DSASA is currently planning to hold another coloring contest for a new design which will be featured on bags to be sold next spring.  The goal is to roll out the new bags on March 21st, World Down Syndrome Day.
  • Sun, May 01, 2011 10:29 AM | Deanna Tharpe (Administrator)

    The DSAIA Diversity Task Force, which formed at the 2011 Leadership Conference in Dallas, has made their first initiative to increase the number of Spanish language materials in the DSAIA Repository.  While working on a number of other aspects of diversity outreach, the task force has already submitted 15 new documents for the Spanish Materials section of the Repository.  Each document included in that section will be available in both Spanish and English. 

  • Thu, March 31, 2011 11:29 AM | Deanna Tharpe (Administrator)

    In March, DSAIA Board Member David Egan spoke before a packed room on Capitol Hill regarding barriers people with intellectual disabilities face in the workplace.  Currently, employment participation is estimated to be as low as 23.9 percent.  This is a figure which Sen. Tom Harkin, D-Iowa, who chairs the committee, described as "shockingly low." 

    “We need to do much better,” Harkin said. “We need to address this problem aggressively and creatively in order to increase the quality of life for the more than 50 million Americans with disabilities, including the almost eight million with intellectual disabilities.”  Witnesses told the committee that increasing employment opportunities relies on having high expectations and working closely with businesses to remove attitudinal barriers. In addition, it’s essential to start working with children at a young age to train them for the workplace and get them involved through internships in competitive employment situations.

    That’s how David Egan got his start. For 15 years, the Virginia resident and Special Olympian has worked as a distribution clerk at the consulting firm Booz Allen Hamilton where he began as a high school intern. "Employment of people with intellectual and developmental disabilities is a smart business decision and a social responsibility," Egan told the committee. "I feel like I am part of a team. My company offers more than a job - it's a career." 

  • Thu, March 31, 2011 11:23 AM | Deanna Tharpe (Administrator)

    The Down Syndrome Association of Middle Tennessee is taking a proactive approach to television coverage, creating a series of video segments dedicated to Down syndrome.  My Special Child, created as a brain child of a DSAMT member/mom Edie Howard, began with two introductory segments which aired in March on WSMV in Nashville. 

    Howard, who has an 8-year-old daughter with Down syndrome named Jacklynn, envisioned a program that would allow DSAMT to reach out to parents across Middle Tennessee in need of support and information as they raise their own children with Down syndrome. Her idea became the basis for My Special Child, the first ongoing series of television segments dedicated to solely to Down syndrome.

    My Special Child will air twice per month on WSMV's More at Midday program, and will provide parents with whort, informative segments totally focused on topics related to the joys and challenges of parenting an individual with Down syndrome throughout their lifespan.  Scheduled to run for 26 segments, the program will provide parents with a library of current research-based information, best practices and success stories.  Audiences will learn what local and national experts have to say on topics concerning individuals with Down syndrome.  Complementing the television segments will be online content at, including links to watch recorded broadcasts of the television segments. 

  • Thu, March 31, 2011 11:16 AM | Deanna Tharpe (Administrator)

    First spouses across the nation joined Mary Pat Christie (First Lady of New Jersey) in hosting events to support advances in Down syndrome cognition research.  Sponsored by Research Down Syndrome (RDS), the events took place on World Down Syndrome Day, March 21, 2011, and included illuminating the governor’s mansion in blue.   First spouses in Alabama, Arkansas, Georgia, Maine, Massachusetts, Mississippi, Missouri, Nebraska, Nevada, New Hampshire, North Dakota, Ohio, Puerto Rico, Texas, Utah, Washington and Wisconsin all participated in the initiative. 

    “It is our hope that the national attention the First  Spouse initiative brings to the Light The Way campaign will motivate increased support for Research Down Syndrome’s efforts to educate and increase awareness and funding for Down syndrome cognition research,” explains Bob Schoen, President of RDS.  Christie announced the initiative at a First Spouse breakfast on February 28, 2011.  Noting the reasons that she and other participating First Spouses have endorsed the Light the Way campaign, Mrs. Christie stated “I am inspired by initiatives which are designed to empower individuals in New Jersey and pleased that other First Spouses have joined this campaign to increase awareness about this research which brings a fresh approach to the complex issues related to the needs of those with intellectual disabilities.”


    DSAIA Executive Director, Deanna Tharpe, spoke at the North Dakota event hosted by Designer Genes which included a book reading by First Lady Betsy Dalrymple.  “I am honored to be a part of this celebration tonight with First Lady Dalrymple,” Tharpe told the crowd gathered outside the governor’s mansion in Bismarck.  “Thanks to the First Lady, Designer Genes, and to all of you for working so hard to ‘Light the Way’.”  Learn more about the events held across the nation.

  • Thu, March 31, 2011 10:39 AM | Deanna Tharpe (Administrator)

    In March, members of Down Syndrome of Louisville (DSL) met at the building site of their new LifeLong Learning Center for a “Dream Party”.  The attendees were invited to write their dreams for the future of DSL on the interior framing walls of the building as this ‘dream’ becomes a reality for the organization.  The  $3.7 million Capital Campaign began in July 2007 with an amazing $1.5 million dollar gift by Kosair Charities, a long time funder of DSL’s programming. The endorsement of such a prominent organization led to DSL’s securing a prestigious challenge grant from James Graham Brown Foundation.  That grant, in turn, stipulated that DSL raise $1.5milllion by June 2010 to receive $500,000 for the Capital fund.


    The powerful challenge grant allowed DSL to present prospective donors the opportunity to leverage their donation by 33%. Diana Merzweiler, DSL Executive Director, explained that “the domino effect of prominent local foundations and the media exposure of our groundbreaking ceremony with our state governor led to individual donors and corporations joining our efforts to build the first in the nation Life Long Learning Center for individuals with Down syndrome.”  DSL also incorporated a “Buy a Brick Campaign” which served as a way for all of their members to contribute and honor their loved ones with Down syndrome.


    “Although we are extremely grateful for such extraordinary financial support shown by our community,” said Merzweiler, “the true accomplishment is that this center will shine brightly as a monument to individuals with Down syndrome and their achievements and value to our world. The LifeLong Learning Center will allow DSL to serve hundreds more members in a progressive community inclusive model from infancy through adulthood. This center will offer encouragement to a prospective new parent that in Louisville , Kentucky ,their neighbors invested in  the future  of their unborn child with Down syndrome.”


    To view a PowerPoint presentation with more in-depth details regarding the capital campaign, visit the DSAIA Repository's 2011 Conference Materials link.

  • Fri, March 04, 2011 11:01 AM | Deanna Tharpe (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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1335 34th St NE
Paris, TX  75462



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