Our Newsletter

<< First  < Prev   ...   4   5   6   7   8   Next >  Last >> 
  • Sun, May 01, 2011 9:31 AM | Anonymous member (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 9:29 AM | Anonymous member (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 10:29 AM | Anonymous member (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 10:23 AM | Anonymous member (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 10:16 AM | Anonymous member (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 9:39 AM | Anonymous member (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 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.

  • Tue, October 05, 2010 10:53 AM | Anonymous member (Administrator)


    Affiliates in Action is excited to announce an amazing new resource for Down syndrome affiliates across the country.  When DSAIA was created over four years ago, the hope was that bringing group leaders together would generate reliable resources and reduce duplication of effort.  Many of you have asked for accurate, quality products at low cost, especially in the area of new parent support.


    Through AIA's Informed Decision Making Task Force (IDM-TF), every month chairperson Mark Leach hosts meetings with the experts in the area of prenatal support.  Through these discussions, an idea which started last summer grew into a plan. It then finally blossomed into a unique group, a ground-breaking book, and an extremely useful resource for groups across the country.


    The majority of the Trustees of Down Syndrome Pregnancy, Inc. are members of DSAIA's IDM-TF, including the two authors of Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome.  This new organization and its materials will not replace the great work that affiliates do at a local level.  Instead, the website and the book will supplement your work with a very accessible national program.


    Down Syndrome Pregnancy, Inc. is a New Jersey non-profit corporation whose purpose is to provide information and support to expectant parents waiting for the birth  of a baby with a diagnosis or increased chance of Down syndrome.  The organization was created to help expectant parents, and also to help the Down syndrome community prepare for the increasing numbers of prenatally diagnosed parents as new, non-invasive diagnostic prenatal testing for Down syndrome becomes available next year.


    The website will include the following free resources:

    1) The book Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome by  Stephanie Hall Meredith and Nancy McCrea Iannone.  A team of highly-qualified medical professionals has reviewed and provided feedback so that they could craft a reliable,

    accurate resource.   The book features amazing photography donated by world-known

    photographers Kelle Hampton and Conny Wenk.

    2) A moderated blog with commentary.

    3) Sample e-mails for pregnant moms to copy.

    4) Many other resources under construction, including five booklets for expectant parents.

    All of the materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.  Visit the website, download the book for free, and consider a donation - what a wonderful way to kick off Down syndrome awareness month!  Visit the website today at www.downsyndromepregnancy.orgCongratulations to Down Syndrome Pregnancy, Inc., for this much-needed resource.



    Wisconsin Upside Down Moves the Chains


    DSAIA Member Forms Partnership to Raise Money and Awareness

    DSAIA member organization Wisconsin Upside Down has partnered with Packer Radio to begin their First Downs for Down Syndrome Program.  "I learned about First Downs for Down Syndrome at the first AIA conference that I attended in Phoenix a few years ago," explained Robbin Lyons, president of Wisconsin Upside Down.  However, this  pairing is organized a little differently than other First Downs programs in that the collaboration is done through the Packer Radio Network rather than the team itself.  It's a quite simple arrangement.  Before the game begins, an ad is aired announcing the program and its sponsor (United Healthcare) and explaining that $25 will be donated by the sponsor for each first down attained by Green Bay during the game.  A total is given at the end of the game and the program (and outcome)  is also reported during the next day's news on the station.  In addition, free tickets have been given to the group.


    Lyons reported that in the first three games, the organization had already received $1,500. "We estimate that we could possibly receive $10,000 in donations from the program in the first year," said Lyons. The radio stations where the Packer Radio Network is housed worked with Wisconsin Upside Down to find a sponsor for the program.


     "It took us a year to find the right client/sponsor," said Lyons. "When the radio network contacted us with the possibility of United Healthcare sponsoring the program, I used training I got through DSAIA and discussed our membership in the organization with them.  They liked the fact that though we were a young organization, we had  access to such a wealth of training and programming. It definitely helped them to say yes to us!"

    However, translating the program into an awareness vehicle was the greatest outcome of the program.  "The station has added our PSA to their lineup and our membership has seen a big spike," Lyons shared.  "We were getting one or two new members a month.  However, in the first week of the program we had five new members join.  In the first few weeks we had more than double that.  We have seen substantial increases in hits to our website. It's definitely a win-win!"



    Down Syndrome Indiana Joins Trade Association


    Down Syndrome Affiliates in Action is proud to welcome Down Syndrome Indiana into its membership.  DSI has been a repeat attendee at DSAIA conferences, offering incredible breakout sessions on topics like Diversity Outreach.  The organization serves a membership of over 1,600 individuals with programs and services ranging from New Parent Outreach to a tremendous Self-Advocate program.  Down Syndrome Indiana's executive director, Lisa Tokarz-Gutierrez, has already made plans to share her

    valuable expertise to other DSAIA members when she and Sarah Cullen of the Massachusetts Down Syndrome Congress team up to present a webinar on Diversity Outreach in November. "I am very excited about the repository and have encouraged all my staff to use it, use it, use it!!!!," Tokarz-Gutierrez said. "DSAIA and its leadership have also been a huge resource and source of support and advice for me."


    Joining DSAIA was a decision made by the DSI Board of Directors to continue to improve the organization, share valuable resources and save the organization dollars along the way.  Rob Morgan, DSI Board Treasurer, summed up one aspect of membership with a very succinct response to DSAIA President Joe Meares:  "I learned last night that the DSI membership to AIA was more than paid for by savings we will realized on Buddy Walk shirts.  Why didn't you tell us this in the first place!!!  This would

    have saved hours of presentations and board dip!"



    D.A.D.S. Work To Get 'Dads' Involved


    Members of D.A.D.S. and DSAIA will be presenting on the National Down Syndrome Society's Monthly Affiliate Webinar on Policy Education for Fathers, scheduled for Tuesday, November 23rd at 12:00 pm Eastern.  Joe Meares, founder of D.A.D.S. and president of DSAIA, will present along with Steve Beck and Tom Milvert.  Beck is Vice-President of DSA of Northern Virginia and Milvert is a board member of Down Syndrome Indiana and leader of the Indiana GAC.  Both are also members of D.A.D.S. (Dads Appreciating

     Down Syndrome).  "NDSS is so pleased to host guest speakers from D.A.D.S. for the November Monthly Affiliate Webinar," said Beth Finkelstein, NDSS Director of Community Relations.


    Meares explains the need behind this presentation, "Since May, I realized I'd asked the question, "Who knows anything about the ABLE Bill" to 250 fathers. SEVEN men  raised their hands, LESS THAN 3%!  I immediately had the idea for this webinar.  I don't think this alone will address the problem of our community's policy agenda getting into the hands of parents and I don't think it alone will become a trigger for action. But, I open every D.A.D.S. presentation with this comment: 'The attitude of the father becomes the attitude of the family'."  Meares sees tremendous value in a "Policy 101" for fathers.  "Especially with D.A.D.S. groups," he says, "I see policy as a great action piece.  And in a functional bucket model, policy absolutely

    should resonate with fathers once the basics are outlined.  An example of the functional bucket model: Traditionally, 529 plans or other college savings vehicles fit in a fathers "bucket". Fathers in our community have to know about the ABLE bill and have to know about the explosion of post secondary educational opportunities available for our children."


    Steve Beck is no stranger to policy issues.  He has spent countless hours working on getting the ABLE  Bill the support it needs to pass.  "Fathers are not very involved because it is not something they see as tangible they can affect," says Beck.  "But most laws passed in Washington DC need to be implemented at the state and local levels.  And advocacy at these levels is just as critical as at the national level."


    During the webinar, the Kennedy Brownback Law, ABLE, IDEA, NCLB, Restraint and Seclusion, and Higher Education bills will all be addressed.  "I'd like to see fathers attending this webinar truly understand how these laws/bills directly affect our community and our children and how Dads can get involved," Beck said. The goal, according to Meares, is to have at least 100 fathers on the call.  And  he reminds organizations that everyone is welcome.  Whether your organization has a D.A.D.S. chapter or not, he hopes that groups all over the country will encourage their fathers in their organization to join the webinar. Past webinars can be viewed by visiting the NDSS website.




    DS Community Loses Treasured Advocate


    Lori Tullos Barta, 39, the 2008-2009 President of the Down Syndrome Association of Central Texas (DSACT), passed away due to complications following heart surgery in August. Lori was not only a extraordinary advocate for people with Down syndrome, but also a loving parent to three girls (one with DS).


    She was instrumental in creating a variety of programs for DSACT including their Learning Program, Inclusive Congregational Initiative and Medical Outreach program.  Lori presented on DSACT's Inclusive Congregational

    Initiative at the 2009 DSAIA conference.  Most recently, Lori was helping coordinate the Texas affiliates support for NDSC's booth at the annual conference for the National Society of Genetics Counselors.


    Those who wish to give in Lori's memory can visit the DSACT homepage for more information at



    Buddy Walk on Washington


    NDSS Announces Date and Registration for Annual Event

    The Buddy Walk on Washington has been scheduled for February 7-8, 2011.  NDSS hopes that the event will send a strong message from the Down syndrome community about  important national policy goals, including improvement for education, research,  healthcare and more.  Attendees can expect to meet and create positive relationships with policy makers, educate elected officials about the strengths and needs of their constituents with Down syndrome, and connect with other Down syndrome advocates

    from around the country while learning new strategies for successful advocacy. 


    To register or learn more, visit the NDSS website.



    Cincinnati Creates New Brand for Adoption Program


    The DSAGC's program to give information and support and help connect families who release their child with Down syndrome to those who want to adopt a child with Down syndrome has been in existence since the early 1980's.   Now, because of a generous grant from Penn Station and Pepsi, the program is getting an upgrade in its name, logo and tagline while still doing the same good work it always has. As of October 2010, in honor of Down Syndrome Awareness Month, the new name will be the "National Down Syndrome Adoption Network" with a tagline of "planning for a loving future."


    "Because 95% of families are out of the DSAGC's nine county area of service, it has always served families across the country but now, it's going to look more like a national program" comments Janet Gora, Executive Director of the DSAGC  "With proper funding and supports, I could envision this program to spin off on its own in the coming years."


    The expansion of the NDSAN also includes greater use of technology, online information and marketing.  In the next year, the Down syndrome community and the doctors that work with families should start seeing more materials from NDSAN explaining the program and offering help free of charge. The expansion efforts are led by a Steering Committee of local professionals including those who have adopted a child with Down syndrome through Robin Steele, the Director of NDSAN.


    The look of the program may have changed, but the mission of NDSAN stays the same:to ensure that every child with Down syndrome is raised in a loving, caring home. For more information or to help support the expansion efforts, please contact Janet Gora, Executive Director of the DSAGC at



    Star-Studded Event Celebrates Down Syndrome


    Be Beautiful, Be Yourself was the theme of the annual JetSet Fashion Show held in Denver, Colorado on Saturday, October 2, 2010.  Hollywood stars Jamie Foxx, Quincy Jones and "Survivor" host Jeff Probst joined Denver Nuggets star Chauncey Billups and Mayor John Hickenlooper for the star-studded event aimed at raising money for the Global Down Syndrome Foundation, benefiting the Linda Crnic Institute for Down Syndrome.


    Foxx escorted his little sister DeOndra Dixon, who has Down syndrome to the event. Dixon was there to walk the runway in fashions from Saks Fifth Avenue, and to present the Quincy Jones Exceptional Advocacy Award she won in 2009 to the 2010 winner, Karen Gaffney. Chairman and CEO of the Special Olympics Timothy Shriver was honored as well with the 2010 Quincy Jones Exceptional Advocacy Award, and musician Eric  Hutchinson closed out the night with songs from his debut album "Sounds Like This."


    The money raised - $1.45 million gross - at this dinner and fashion show attended by the above folks and more than 1,200 other supporters goes to the Global Down Syndrome Foundation for its support of the Linda Crnic Institute.  It is believed to be the largest single fundraiser for Down syndrome.  Michelle Sie Whitten, executive director of the foundation and mother to Sophia (6 years old with Down syndrome), is a former presenter at the annual DSAIA conference.  DSAIA board members Amy Allison

    (DSGKC) and Amy Van Bergen (DSACF) were on hand to volunteer for the event.

  • Tue, July 06, 2010 11:52 AM | Anonymous member (Administrator)

    Texas Groups Form Regional Partnership


    Down syndrome associations from all across the state of Texas will meet in San Antonio in August for an inaugural meeting of a regional alliance, aimed at fostering a better environment of sharing information and resources between the groups.  The groups held a meeting at the 2010 DSAIA Conference and began making plans for a regional meeting and a long-term collaboration.  This year's meeting will be held at Morgan's Wonderland and will feature its founder, Gordon Hartman, as a guest speaker. 

    "We met at AIA and wanted to find a way to collaborate throughout the year," explained Terri Mauldin, Executive Director of the Down Syndrome Association of San Antonio.  "We hope to use the DSAIA Conference as a starting point of discussion each year to target issues affecting our members at the state level."  Groups will send representatives to discuss a number of topics including the creation of a Governmental Action Committee, updates on Texas legislation affecting the Down syndrome community, education workshops and conferences, secondary education issues relating to Texas and building a "community-representative" board.  


    2011 Conference Opportunities

    The 2011 AIA Conference Planning Program Committee is soliciting presentation proposals from Down syndrome parent groups who are doing amazing things. This is your chance to educate others on your group's proven programs and best practices in non-profit management. Breakout sessions will be 60 minutes in length and will cover a variety of pertinent topics to help group leaders bring new ideas and vitality to their organizations.  Deadline for submissions is August 15, 2010. You'll find the submission form online here.

    Sponsorship of the conference, exhibiting or advertising in the program provides a premiere opportunity for you to showcase your programs, services or products to an estimated 100 Down syndrome organizations in attendance at the annual conference - representing over 100,000 people with down syndrome.  Interested in sponsorship opportunities, exhibitor spaces, or organization scholarships?  You'll find
    online applications at our site for your convenience. 


    Camp Offers Lifetime Passes

    The Joy of Downs, in the spirit of collaboration and sharing, is offering a limited number of Lifetime Passes to attend Camp Many Stars to members of Down Syndrome Affiliates in Action Trade Association. The Lifetime Pass is purchased and owned by a local support group and allows one family a year to participate in Camp Many Stars' week-long family adventure camp at no cost.
    The purpose of the Lifetime Pass is to enable families to attend who might not otherwise have a chance to participate in the family fun, adventure, and learning that this first and only camp provides. The Lifetime Pass has a one-time cost of $5,000 and is good for thirty years. Because the average family week is approximately $1,500, the accumulated value of the pass exceeds $45,000. Only a limited number of passes will be issued. For more information on the passes, contact The Joy of Downs at  You can visit the camp's website for an overview at


    DSAIA Directors To Serve on NDSS Committee

    DSAIA board members Doris Erhart (DSA of Central Oklahoma), Mark Leach (DS Louisville), and Amy Allison (DSG of Greater Kansas City) were recently asked to serve on the NDSS National Governmental Affairs Committee (NGAC). The NGAC is a national body of advocates that advises the NDSS National Policy Center on federal legislation and policy activities.  The NDSS National Policy Center works to protect the rights and improve the quality of life for people with Down syndrome and their families. 

    A major responsibility of the NGAC is assisting with updating the Policy Center's legislative agenda.  The group will meet quarterly by conference call.  The DSAIA directors were invited to join the NGAC because of their exemplary advocacy for the Down syndrome community through assistance with a variety of legislative and policy matters. 


    President's Message

    In this issue, I'd like to focus on accountability to our members. We remain true to our mission.
    "To support and advance the growth and service capabilities of the local and regional Down syndrome organizations we serve, to be the conduit of value driven training programs, best practices and support for our members"
    DSAIA Trade Association was built on the foundation of a very successful leadership conference.  Our conference will be continue to be the cornerstone of DSAIA, but is far from all we do.
    In just over 100 days, YOUR trade association has:

    Developed NINE VIP Discount buying programs
    Produced five webinars and committed to two more each month
    Accelerated dialogue with DSRTF, NDSS and NDSC to outline our goals and identify projects of collaboration
    Opened our member repository with more content added weekly
    Put in place an Executive Director to work directly with our members and carry out our mission

    Currently DSAIA has 58 members.  Fifty-eight Down syndrome organizations with Boards who believe the DSAIA trade association adds value and pays dividends that far exceed the cost of membership. In 100 short days----we have and will continue to do what we've promised, driven by our mission.
    I encourage you to use the products and services your organization pays for us to deliver. Visit your repository; use the VIP discount programs to save money on products and services; encourage your leadership to attend our webinars; utilize our Executive Director. Your organization has already made the investment.   Now, enjoy the dividends!
    If your organization is a member, I encourage you to explore and use ALL your member benefits. If your organization is considering membership, I hope you'll find out more about about DSAIA and what it accomplishes the other 362 days each year by attending a webinar next week (see below). 
    In your service,
    Joe Meares
    DSAIA Membership Webinar Registration Links
    Tue, Jul 13, 2010 12:00 PM - 1:00 PM CDT

  • Wed, March 24, 2010 11:42 AM | Anonymous member (Administrator)

    (March 24, 2010) Kansas City, MO–The March 21 World Down Syndrome Day celebration in Kansas City, Missouri also marked the launch of Down Syndrome Affiliates in Action (DSAIA), a trade association composed of more than 55 Down syndrome support organizations from across the country. DSAIA fills a national need that will improve each member organization’s community.

    Historically, Down syndrome support organizations developed and operated independently, often duplicating efforts that use significant community funds. The founders of DSAIA realized that an organized structure for collaboration would allow groups to pool their resources to share the very best practices to avoid “reinventing the wheel” in each local community.

    Recognizing that this need demanded a permanent framework, affiliate members elected their first board of directors. The Board represents DSAIA’s national scope, with directors who are affiliate leaders from Northern Virginia to Denver, Colorado, and from Grand Rapids, Michigan to Houston, Texas.

    Joe Meares, DSAIA Board President, says that he “looks forward to supporting Down syndrome affiliates through building a repository of programs and materials, hosting regular sharing sessions throughout the year, and using DSAIA’s economies of scale to broker benefits for local groups.”

    DSAIA Board Vice President Bridget Murphy emphasized that “DSAIA will itself not seek to duplicate efforts. DSAIA plans on complementing and working with other national, regional, and local organizations to create a unified effort for increasing the acceptance of and opportunities for individuals with Down syndrome.”

    Prior to becoming a trade association, the Affiliates in Action Annual Conference was organized in 2007 by the Down Syndrome Guild of Greater Kansas City. The conference experienced exponential growth, doubling from the number of affiliate groups that attended the first year and tripling in the number of attendees.

    More information about DSAIA can be found by visiting


    About DSAIA

    Founded in 2006, Down Syndrome Affiliates in Action started as a conference bringing together outstanding leaders of Down syndrome organizations from around the country. After consecutive years of explosive attendance, the conference has extended its reach internationally and formed the trade association to continue its mission. The purpose and mission of DSAIA was, and continues to be, serving Down syndrome affiliates through collaboration, resource sharing, and networking.

    For more information about DSAIA, or this particular story, please contact Amy Allison at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or by calling 913-384-4848.


<< First  < Prev   ...   4   5   6   7   8   Next >  Last >> 

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

Get in Contact

Down Syndrome Affiliates in Action
PO Box 7192

Missoula, Montana   59802



Member Access

Click Here

Powered by Wild Apricot Membership Software