Our Newsletter

  • Sun, January 01, 2012 12:26 PM | Deanna Tharpe (Administrator)

    Plan Now To Be a Part of the Worldwide Celebration!


    WDSD logo

    Often overlooked by the numerous activities (including walks) held during Down Syndrome Awareness Month, World Down Syndrome Day provides your organization with an opportunity to engage your membership and community beyond October. It provides justification for why an organization should host a medical outreach program or peer presentation, or publish a submitted column.

    A list of over 40 low and no-cost ideas are featured in the 2010 DS Awareness Ideas webinar now housed in the DSAIA Repository. Remember these steps to success from the webinar:

    • Pick an idea based on budget and time
    • Create a time line for activities
    • Enlist a committee
    • Write an article for your newsletter
    • Send press releases

    It could be as simple as starting a viral campaign with the help of your membership or launching a new program, website, newsletter, or product on 3/21/12. Try sending one inspiring email a day to your stakeholders the first 21 days of March. DSA of Los Angeles' Gail Williamson has orchestrated the 21 Days of DS Quotes and invites groups to subscribe to DSALA's emails and then share with their members via social media or email campaign.

    Get your families involved in their own campaigns by asking them to send a card to their physician with a picture and update on what their child is doing. Include the latest healthcare guidelines, a well-written article about someone with DS, or perhaps a list of the resources your organization offers those in the medical community. For little investment, your group can hold a T-shirt design contest, give plaques/awards to locals who have made a difference in the lives of individuals with Down syndrome or just show up at your local gathering place (downtown?) with balloons and information on DS to pass out to people who are gathered there.

    No matter what you choose to do to celebrate, now is the time to start planning! For more ideas, visit the DSAIA website to watch the DS Awareness Ideas video and view the Awareness Materials under Events & Fundraising in the repository.

    Get On the Fast Track at the 2012 Conference!

    New to the 2012 DSAIA Conference is the ability to choose your sessions by track. As in the past, you will have many breakout sessions from which to choose, but this year they have been organized into eight specific tracks. If you are a board member, staff or commitee person interested in one topic area, you can immerse yourself in top-quality training without having to choose one breakout session over another in any given time slot. Tracks offered this year are:

    • Fundraising & Awareness
    • Board Management
    • Organization & Staffing
    • Prenatal Testing & Medical Outreach
    • Programs
    • Marketing & Member Services
    • Self-Advocates
    • Legislative Advocacy

    The DSAIA Conference Planning Committee has tried to include at least one of the eight tracks in each time slot with very little overlap. So fasten your seatbelt and enjoy the ride!

    View the conference breakout schedule on our Online Community site. Click here to register for the conference today!

    Remember, Early Bird Discounts end on January 10th!

    VIP Discounts Continue on NetApprentice Products


    3 Nerds & A Server Offers a Variety of Products


    3 Nerds & a Server offers DSAIA members a substantial discount on any of their NetApprentice products and modules. From base CMS software (if you know Word, you can maintain your website!) to event calendar and newsletter modeules, 3 Nerds offers discounts up to 25% for DSAIA groups.
    Recently, 3 Nerds has added several new modules to the DSAIA VIP Offer including:
    • Document Warehouse Module
    • Blog Module
    • Chat Module
    • Commerce Module

    Find out more about the 3 Nerds VIP Offer by downloading the flyer. To see a complete list of VIP Programs, visit our website.

    DSAIA Announces New Board Development Webinar Series


    DSAIA's new workshop series begins with Board Development 101 on Tuesday, January 17th at 8 pm Eastern/7 pm Central with presenter Jane Page-Steiner. During this webinar we will discuss the various aspects of board development and strategies you can implement to improve your board. We will explore the challenges of board recruitment; ways to develop a strong board structure and how board education can create a more vibrant and effective board. The webinar will include a one-hour presentation followed by 30 minutes of Q & A.

    Jane Page-Steiner, is a respected nonprofit consultant and public speaker. Currently the president of JPS Nonprofit Strategies, she has been a part of the not-for-profit community for more than 23 years. Jane founded JPS Nonprofit Strategies because of her passion and ongoing commitment to helping nonprofits build their capacity and improve their performance. Before establishing JPS Nonprofit Strategies, Jane served as the Vice President of Affiliate Relations for the National Down Syndrome Society. Jane provided regular counsel on leadership development, capacity building and resource development for affiliates across the country. Jane has served on numerous committees, task forces, and planning groups, and served on the board of the National Down Syndrome Society for two terms. Jane served as the first executive director for the Down Syndrome Association of Greater Cincinnati for more than ten years. She provided leadership during a period of tremendous growth in revenues, services and staff. She worked closely with the board to develop and implement strategic plans and create a diverse development program, enabling growth in programs and a dramatic increase in revenues.

    Five additional webinars will follow each month:

    • Board Orientation
    • Fundraising with Your Board
    • What Is the Role of Your Board?
    • Shared Responsibility & Accountability
    • Strategic Planning with Your Board

    Encourage your entire board to register for this incredible opportunity! To see a complete listing of the dates/times, visit the DSAIA website.

  • Thu, December 01, 2011 12:24 PM | Deanna Tharpe (Administrator)

    Treasure Valley Reaches Out


    Diversity outreach is a difficult initiative to pursue, but one that most groups have tried to tackle over the last few years. Treasure Valley Down Syndrome Association (TVDSA) has begun the journey of reaching out to its Spanish-speaking members through their newsletter. "We have a new board member that is Hispanic," explained Celena Auger, TVDSA Newsletter Editor. "I told her that I would like to "try" a double issue of our newsletter (Spanish & English) but would need help translating it. Since July I had found two articles that were already available in both languages, which I thought would be the "easiest" way to start."

    TVDSA published their first e-newsletter in both languages in November. Even though she was able to find articles that were available in both languages, Auger said it was still double the effort. "I had to have my English-version done a week earlier than usual to forward to the the communications committee for review and finalization," she explained. "That meant all committee deadlines were moved up by a week as well in order to give the translator adequate time. The translator stated the side bar was the most complicated, as it isn't "dialog" and many English words have more than one meaning. "

    Auger said they will do it again, but not monthly as it is a very involved process when done correctly. To view their November newsletter in Spanish, click here. To view it in English, click here. To find out more about Diversity Outreach, DSAIA members can view also view the 2010 webinar on the subject featuring presenters from Down Syndrome Indiana and Massachusetts Down Syndrome Congress.

    DSAIA Makes Conference Networking Even Easier

    DSAIA has recently opened its new networking tool for the upcoming 2012 conference. DSAIA's new Pathable community allows you to connect to other conference attendees easily. It allows you to schedule your conference day with just a few clicks and then download to a printed or mobile copy!

    This year's conference registration fees also include Buddy Walk on Washington registration so making those congressional appointments will be important. The new DSAIA Pathable site will allow you to make appointments on your calendar with other groups - making it easier to divide and conquer using the power of your statewide Down syndrome organizations.


    Wondering about other attendees with your same job (board or staff) description? What about others whose passion is the same initiative as yours? Using tags on your profile will help you connect with others who are working on Fundraising, Medical Outreach, or Diversity Awareness. Send private messages to connect or use your Twitter account to post online.

    Visit the site today but enjoy full benefits when you register for the conference.

    The ABLE Act is Back!

    As we gear up for an active advocacy event in 2012, the National Down Syndrome Socity (NDSS) gives Buddy Walk on Washington/DSAIA Leadership Conference attendees a head start on the issues on everyone's agenda next year. The upcoming NDSS webinar will be "ABLE Act 101 - Everything You Need to Know About the ABLE Act" and is scheduled for December 7th at 1pm Eastern.

    The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law


    To register for the webinar, click here. If you would like to begin to make your plans to attend the events in February/March of 2012, visit our Conference page online.

    New Technology VIP Program

    Firespring Offers Website & Social Media Package


    Your organization's website, communication program, and social media plan can make a real difference in this age of technology. That is why DSAIA is working with companies such as Firespring to offer discounts on products to help you reach your potential in this digital age. DSAIA members receive a 20% discount on Firespring products. For more information including website design, email marketing and membership management, download the Firespring VIP Flyer.


    Take Advantage of Discounts Before They Expire


    The DSAIA Member Services Committee is hard at work on renewing discounts from prior vendors plus looking at new and exciting programs for 2012. In the meantime, don't let 2011's discounts pass you by! Find out more about these expiring programs and take advantage of the savings:

    To see a complete list of VIP Programs, visit our website.

    DSAIA Announces New Board Development Webinar Series


    In response to our members' requests, DSAIA's Education & Training Committee has scheduled an in-depth board development training series. Beginning with Board Development 101 and continuing for a minimum of six monthly webinars, the series will tackle everything from board member roles and responsibility to fundraising and strategic planning.

    The first webinar in the series is scheduled for Tuesday, January 17, 2012 at 8 pm Eastern. The series will continue with one session each month. A Certificate of Completion will be awarded to attendees completing all six sessions. To learn more or register, visit our Webinar page online. This webinar series is open only to DSAIA members. If your organization has thought about joining, this is a perfect time to find out more about membership and all its benefits.

  • Tue, November 01, 2011 10:49 AM | Deanna Tharpe (Administrator)

    This is our initial blog post - if you want to see more, visit us here.

    By Joe Meares, President, DSAIA

    When my four kids were younger, each Easter, I would hide dozens of eggs around our house, yard and woods for them to find.

    Once they gave up, it was up to me to walk the entire course to retrieve the eggs not found or to lead them to the still-hidden treasures.

    This was logical because I’d hidden the eggs and only I knew where they all were!

    If you think of your repository as a great big yard filled with Easter eggs and in some are exactly the treasure you’re seeking, then, please remember Deanna is the one who “hid the eggs”. Deanna KNOWS where all the treasures are.

    OK, I thought of the Easter egg analogy after I asked Deanna for a pie chart with a breakdown of items in the repository and all the pretty colors reminded me of Easter eggs.

    I REALIZE there is a risk in comparing items in our repository to well-hidden eggs, butundefinedit’s just an analogy!

    I asked for the chart after visiting with several DSAIA members recently.

    A couple of things I heard:

    An E.D. was looking for something specific in the repository and couldn’t find it. She called another organization and borrowed their document. I asked Deanna to look for the same item and it turns out there are 18 examples in our inventory. This E.D. only saw one example.

    A board president asked me if Deanna was a volunteer or staff. With the belief she was a volunteer, this board president wanted to respect Deanna’s time and seldom asked for help. She also said as a volunteer herself, she doesn’t always have time to find what she needs in the repository.

    To be clear as a crystal egg-- Deanna is staff.

    Deanna’s job is to provide support for DSAIA members. That SUPPORT includes leading you to the treasure- filled eggs in the repository. After all, only Deanna knows where everything is hidden.

    We have over 800 items in our egg hunt now and it continues to grow. There has to be a limit of the categories, so, sometimes finding exactly what you want takes a little digging.

    Helping you find what you need IS Deanna’s job and it’s a service your membership in DSAIA entitles you to.

    I encourage all of you to take advantage and just ask where your golden egg is hidden.

    The colorful pie chart also shows some thin slices. That will be the grits for my next blog and I’m sure Deanna will tell me when it’s due. That too, is her job!

  • Tue, November 01, 2011 9:10 AM | Deanna Tharpe (Administrator)
    Affiliates Exhibit at Area ACOG Conferences       


    ACOG SeMIOver the course of the last couple of months, Down syndrome affiliates have reached out on a national level to medical providers (ahead of the Sequenom test) by exhibiting at American College of Obstetricians and Gynecologists (ACOG) conferences across the United States. Groups coordinated efforts and funding to exhibit at conferences in Kansas City (MO), Plano (TX), Naples (FL), Philadelphia (PA), and Detroit (MI). The exhibitors were able to distribute Understanding a Down Syndrome Diagnosis booklet, Delivering a Down Syndrome Diagnosis booklet, flyers, Brighter Tomorrows flyers, National Down Syndrome Adoption Network flyers, and other timely information such as articles on the latest in Down syndrome research.


    "My favorite phrase was 'I did not know that!", related Rosa Rocha of DSA of Houston. " I kept hearing it over and over again as attendees learned of all the great available resources for them and their patients." Nancy Iannone ( remarked that conversations with doctors at their booth were 'wonderful'. Likewise, Amy Van Bergen of DSA of Central Florida reported that she heard comments such as "We don't usually see you here at these glad you are" and "Thank you for being here". A couple of the exhibiting groups even had an opportunity to have a discussion with representatives of Sequenom. DSAIA worked with several individuals (including Stephanie Meredith, Mark Leach of DS-Louisville and Nancy Iannone of to create a "training" webinar to assist groups on being effective exhibitors as they participated in the conferences.

    Affiliates and other organizations that participated in the effort are listed below:

    Bringing Up Down Syndrome - Southern New Jersey
    Celebrate Down Syndrome
    Children's Hospital Philadelphia T21 Program
    Down Syndrome Association for Families
    Down Syndrome Association of Austin
    Down Syndrome Association of Central Florida
    Down Syndrome Association of Central Oklahoma
    Down Syndrome Association of Delaware
    Down Syndrome Association of Houston
    Down Syndrome Association of Memphis & MidSouth
    Down Syndrome Association of West Michigan
    Down Syndrome Guild of Greater Kansas City
    Down Syndrome Guild of Southeast Michigan
    Down Syndrome Indiana
    Down Syndrome Pregnancy
    Down Syndrome Society of Wichita
    Greater Clear Lake Families Exploring Down Syndrome
    Knowledge & Information About Individuals with Down Syndrome
    National Down Syndrome Society
    Network 21 - Central New Jersey
    Red River Valley Down Syndrome Society





  • Fri, October 21, 2011 12:53 PM | Deanna Tharpe (Administrator)

    Major news was announced this week of a new prenatal test for Down syndrome that will impact our community. In response, DSAIA shared a resource with our members including a member communication and press release. DSAIA encouraged organizations to issue a similar press release to their local communities and membership, tailored to reflect their organization's capabilities. One capability that every DSAIA member has is access to the Repository which holds the tools for effective, responsible medical outreach. Should you have questions or need further information, please contact DSAIA Board Member Mark Leach, chair of DSAIA's Informed Decision Making Task Force. Mark can be reached at 502.938.4864 (c) or by e-mail at  If you are a DSAIA member and did not receive the communication, please contact DSAIA Executive Director Deanna Tharpe at or 701.425.7129.    

  • Sat, October 01, 2011 1:48 PM | Deanna Tharpe (Administrator)

    Cincinnati Celebrates 30 Years at their Annual Buddy Walk


    On September 10th, the Down Syndrome Association of Greater Cincinnati celebrated individuals with Down syndrome at their annual Buddy Walk  while also celebrating thirty years as an organization.  According to Janet Gora, DSAGC Executive Director, several of the founders were present to lead the walk and also were featured in the "Founders' Tent" where families could visit with them about the early days of the organization and view an organizational timeline.  "Most of the founders are still involved with the organization," Gora said.  


    This year's DSAGC walk brought approximately 10,500 people out.  Gora explained that along with the 30th AnniversaryCelebration, they also increased the number of fundraising teams recognized from ten to thirty this year.  On the Friday after the walk, eight Buddy Walk committee members (some self-advocates) visited their major sponsors personally to deliver a special piece of artwork, Buddy Walk shirts, candy and other gifts.  "We hand-delivered the gifts to thank our sponsors and to plant the seeds for their continued support next year," said Gora.  


    DSAIA invites you to share your walk stories (and lessons learned) with us so that we may collect these experiences to share with others.  


    Down Syndrome Consortium Holds Inaugural Meeting 


    DC Consortium pic

    Pictured here:  Deanna Tharpe (DSAIA), Michael Harpold (DSRTF), Jon Colman (NDSS), David Tolleson (NDSC), Michelle Livingston (GDSF), Bob Schoen (Research DS)

    The National Institute of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosonal condition.  The inaugural meeting of this group was held on the NIH campus on September 29 with members of the NIH Down Syndrome Working Group and representatives from prominent Down syndrome and pediatric organizations.   


    "The idea is to have an open channel of communication

    between the NIH and those organizations intimately involved with Down syndrome," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development, the agency that will chair the new consortium.  "The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies, and potential avenues for future research.  In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH."


    A focus of the consortium will be the implementation of the NIH Down syndrome research plan.  The consortium will meet two to three times a year.

    Is Your Group Ready to Celebrate?  


    Down Syndrome Awareness Month is here!  As your organization begins to celebrate, are you still searching for new, exciting (additional and easy) ways to promote awareness of Down syndrome in your community?  DSAIA invites you to watch the DS Awareness Day/Month Ideas webinar which is located in the DSAIA Repository.  The webinar (recorded last year) features Janet Gora of DSA of Greater Cincinnati and Mark Leach of Down Syndrome Louisville and explores 21 low-cost and 21 no-cost ideas for promoting awareness locally.


    In addition to the webinar, DSAIA members will also find a number of items in the Repository under Awareness Materials.  Visit the Events/Fundraising section to find both templates and ready-to-print materials.   Be sure and send us your stories about your own awareness activities so that we can share your success (and great ideas) with others! 


    New Study on Down Syndrome Shows Positive Attitudes 


    Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members and individuals with Down syndrome.  Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe.  Followng is a short list of results: 

    • 99% of parent/guardians said they loved their child with Down syndrome
    • 94% of brothers/sisters expressed feeling of pride about their sibling
    • 99% of people with Down syndrome said they were happy with their lives   

    As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome.  The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents.  Now, we have the largest and most comprehensive information to share about Down syndrome.  Read more about how your organization can utilize this information.  You can read the complete results of the study here.

    DSAIA 2012 Registration To Open Soon 

    Make your plans now to attend the 2012 DSAIA Annual Leadership Conference which will be held in Washington, D.C. February 29-March 3.  The event is planned in conjunction with NDSS' Buddy Walk on Washington.  Event attendees who register for the DSAIA conference will automatically be registered for the NDSS activities as well!  This partnership will allow Down syndrome leaders to participate in both the Day on the Hill advocacy event and important leadership training. 


    Visit the Conference section of the DSAIA website to learn more about registration options, sponsorship opportunities and speakers.  Registration officially opens October 15th with discounts for DSAIA members and early registration.    

  • Fri, September 30, 2011 1:01 PM | Deanna Tharpe (Administrator)

    Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members.  Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe.  Followng is a short list of results:

    • 99% of parent/guardians said they loved their child with Down syndrome
    • 94% of brothers/sisters expressed feeling of pride about their sibling
    • 99% of people with Down syndrome said they were happy with their lives 

    As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome.  The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents.  Now, we have the largest and most comprehensive information to share about Down syndrome.  Read more about how your organization can utilize this information.

    What can you do now?


    1.  Download this press release regarding these articles.  Please feel free to use this information in your communications to your members.


    2.  Contact your local media.  These studies present a unique opportunity for your organization to share the real stories with your local reporters.  Finding families whose stories resonate with the reported statistics is a wonderful way to generate local media attention.  Please consider forwarding the attached press release to your media contacts. 


    3.  Share the research.  The journal has kindly made the articles accessible to everyone, even those who do not have a subscription.  Please  feel free to direct your members to the following links: 

    4.  Contact your local physicians.  Now you have the research to help secure meaningful meetings with your area physicians.  Send the journal articles to your local obstetricians, geneticists, genetic counselors, midwives, neonatologists, and pediatricians.  And, then ask them if you could meet with them to tell them more about your group.  Ask about opportunities for your families to present their stories at Grand Rounds or other healthcare gatherings.


    5.  Contact your local medical, nursing, and genetic counseling schools.   Ask if you could sponsor a "journal club" where students discuss the papers, and you bring along family members and self-advocates to add their perspectives. 


    6. Legislative efforts.  Please feel free to reference the work in any legislative efforts that are targeted toward improving the lives of people with down syndrome.




  • Thu, September 01, 2011 10:18 AM | Deanna Tharpe (Administrator)

    Affiliate Brings Smart Start Home To Tennessee Families

    The Down Syndrome Association of Middle Tennessee attended a session hosted by the DSG of Greater Kansas City at the 2011 DSAIA conference where they shared information on the Smart Start Pre-K Program developed and rolled out in 2010.   "I brought the information back and presented it to the Executive Committee," explained Sheila Moore, DSAMT Executive Director.  "They took immediate action to get it started including adding it to the current year's budget." 

    Board member Meghan Burke, a Special Education instructor and sister of an individual with Down syndrome, began the job of organizing the program.  The program has met with great response from families and is already at full capacity.  DSAMT was able to access all the materials DSG uploaded to the repository and launch the program immediately to help their members.   "Having the materials to begin the program made it easy to go from an idea in February to a program implemented by September," said Moore.  DSAMT is adept at utilizing ideas from DSAIA's conference.  The group implemented Kansas City's DS Specialist Program last year and hosted 200 educators at a recent training.

    Watch DSAMT's Sheila Moore promoting their Smart Start program during a My Special Child segment on WSMV.   You can review the Smart Start powerpoint slides and supporting materials in the DSAIA Repository.  


    Back To School Tools 

    This can be a stressful time of year for families as they cope with new teachers, new campuses or even school for the first time.  Here are a few resources you can share with your families as they head back to the classroom: 

    More resources can be found in the DSAIA Repository including the Back To School Tools webinar. 

    Affiliate Group Creates Their Own Educator's Manual

    The Down Syndrome Network of Montgomery County Education Committee has worked for over a year to compile a guide that contains information about Down syndrome, curriculum modification, inclusion, behavior strategies, Universal Design for Learning, and useful reading, writing and math programs. The goal of creating the guide was to streamline individual resources into a product that would be provided on a district-wide level on behalf of the group.  This directly aligned with their goal to become the school district's "go to" resource for Down syndrome.

    DSNMC board member Heather Sachs explains that DSAIA played a large role in the creation of the guide.  "Aside from providing the inspiration to develop this guide, we reproduced some content and obtained ideas from specific groups' websites," explained Sachs.   "In particular, the Down Syndrome Association of Central Texas' educator manual was extremely useful.  We were blown away by the helpful attitudes of DSACT members and other participants who we met at the past few AIA conferences.  Everyone with whom we spoke about this project at AIA encouraged us and offered to provide material."

    DSNMC plans to give one printed and bound guide to every elementary school in their local school district.  They have also made this guide available as a PDF for download on their website and have placed a copy in the DSAIA Repository to provide DSAIA members with an opportunity to share it with educators in their area or to create their own. 



    V.I.P. Offer:  Wild Apricot Discounts

    Website/Member Management/Event Registration 

    DSAIA has partnered with Wild Apricot to give our affiliates a 20% discount off annual subscriptions to their services.  Wild Apricot provides easy-to-use website software, membership/donor management and online event registration modules.  The web-based software can be used as a stand-alone website or integrated into an existing website.  
    For more details on the Wild Apricot VIP Offer, please download the flyer.  An Wild Apricot Software Overview webinar is scheduled for September 14th at 3 pm EDT for those interested in learning more about the product.  A complete listing of VIP Offers can be found on the DSAIA website.

    Louisville Celebrates Its New Facility     

    DSAIA Member, Down Syndrome of Louisville (DSL) will hold the Grand Opening of its new facility on September 18, 2011 at 2 pm. The 18,000+ sq. ft. Lifelong Learning Center is the culmination of DSL's $3.8 million capital campaign. DSL's capital campaign was presented at this year's conference, and the presentation is available in the DSAIA Repository. All are welcome to attend the Grand Opening and to stop by for a visit when your travels bring you to Louisville.    

  • Tue, August 30, 2011 3:45 PM | Deanna Tharpe (Administrator)
    Phoenix Group Utilizes Technology To Bring Information To Members

    The Down Syndrome Network of Arizona moved past the traditional meeting format in order to overcome attendance issues a few months ago by using webinars in lieu of an in-person meeting.  "Our group thought that a webinar on a popular topic like 'behaviors' would make it more accessible for parents, teacher, para-professionals and therapists," explained Laura Chapnek, DSNAZ Past-President.  "One of the criticisms we receive is distance (too far east, not convenient for those in the north or west). 

    Budgeted dollars for a speaker went farther due to not having to book a venue or provide refreshments.  Forty attended the first session and 21 attended the second.  "We are planning to incorporate webinars for our 'Parents & Schools in Partnership Program'," said Chapnek.  "I believe that we should embrace any technology that is going to help those who work with individuals with Down syndrome to have a better quality of life." 


    DSNetwork's advice to those contemplating using webinars in their organization?  Make sure you do a practice webinar, view the presentation slides early to make sure it is a good use of your funds and the audience's time, and look for cost-saving webinar software (such as GoToWebinar) through sites like Techsoup


    Spread the Word to End The Word at Your Awareness Walk 


    Help educate the attendees at your walk on the hurtful impact of the R-word. Contact your local Special Olympics chapter(s) and ask them to set up a Spread the Word tent at your upcoming walk. With a small investment of a few hundred dollars at the R-word store, your group can purchase banners for everyone to sign and stickers for those who sign the pledge.  If you are tech savvy and have internet access at your walk, we encourage you to have the pledge site pulled up on several computers so attendees can sign on right then and there! You can also purchase/sell t-shirts and have door prize drawings for R-word gear for those who sign the pledge. Visit the Resource Page for additional ideas.  

    It Pays To Attend DSAIA Webinars 


    Every attendee who joins a DSAIA webinar between now and December 31st will have their name entered in a random drawing to win an i-Pad. The more webinars you attend, the more chances you have to win! The winner will be drawn and notified on January 2, 2012 and the i-Pad will be shipped by January 10th.  Upcoming webinars can be found on our website .
    (Note: this promotion does not apply to downloading webinars post event from the DSAIA Repository.)

    New VIP Book Discount Program Announced


    Phronesis Publishing Offer 



    DSAIA and Phronesis Publishing are making sharing printed resources cost effective for our affiliates. This V.I.P. Program offers a discount of up to 55%, available through December 31, 2011. Consider the selections offered at the Phronesis website for your awareness walk or educational conference. Download the flyer for more details.



    Is Your Organization Covered? 


    No matter how large or small your group, insurance is sure to be a top priority.  But are you covered fully and with the right insurance for your organization's programs and events?  DSAIA has partnered with Johnston Fiss Insurance to assist in the review and purchase of insurance products for our members.  You'll receive a no-obligation review as well as be eligible for discounts through two respected companies.  Watch our informative two-part series "Are You Covered?" online today and download the flyer for more details on the offer.




    All Hands on Deck

    DSAIA is looking for help with our Member Services and Member Education Committees. We invite you to consider joining one of these committees to provide valuable feedback as we develop additional VIP programs, webinars and solicit documents for the repository. Committees meet monthly via conference call so your time commitment would be 15 hours per year to help DSAIA.

    Member Services Committee 

    • Explore and follow up on brokered discount opportunities for DSAIA members
    • Create printed materials for the V.I.P. Programs (looking for someone with desktop publishing/spreadsheet skills)
    • Assist in member retention/recruitment campaigns

    Member Education Committee 

    • Plan and program monthly webinars
    • Identify and locate additions to the Repository
    • Assist Conference Committee on selection of speakers/topics  
    Adult Employment Survey

    With the lack of information on current employment status forChris Hebein adults with Down syndrome, Libby Kumin, Ph.D., CCC-SLP, has crafted a survey to collect this information.  The survey will collect employment data such as job locations and job descriptions.  The goal is to use this information to not only document the current situation but also advocate for job training programs, funding and more variety in job choices.  


    The survey is designed for adults with Down syndrome age 18-50 (and their parents if applicable).  Find the survey online through December 31, 2011.     


  • Tue, August 30, 2011 3:36 PM | Deanna Tharpe (Administrator)

    Down Syndrome Groups Partner to Provide Information to Medical Community  


    Several organizations collaborated to host an exhibit booth at the National Association of Woman's Health, Obstetric and Neonatal Nurses (AWHONN) Convention which took place in Denver June 25-29th.  Over 2,500 attendees from across the country were in attendance; a group of professionals which are on the frontlines for giving a diagnosis in the delivery room and will soon be the professionals presenting prenatal diagnosis when the new blood tests become available.  DSAIA, NDSS, DSG of Greater Kansas City, DSA of Central Oklahoma, Mile High DSA and other private donors funded an exhibit booth to provide accurate and up-to-date information on Down syndrome to attendees. The partnership purchased 500 Delivering a Down Syndrome Diagnosis books from Lettercase to supplement the hundreds donated by the National Down Syndrome Society in order to distribute them during the convention.


    Around the country, more affiliates are joining the effort as Down Syndrome Indiana, the Down Syndrome Association of West Michigan and the Down Syndrome Guild of Southeast Michigan will coordinate to cover the District V conference in Detroit this October.  Local organizations interested in getting involved in the effort are encouraged to contact DSAIA Board Member (and Informed Decision-Making Task Force Leader) Mark Leach for information on upcoming dates and locations.

    Is Your Website Working As Hard As You Are? 


    Jay Wilkinson

    Learn from more than 10 years of focus group research with nonprofit constituents and donors how to captivate and engage your audience in this 1 1/2 hour webinar brought to you by DSAIA on Wednesday, August 3, at 9:30 am CDT/10:30 am EDT. 


    You'll discover:

    • the 5 required elements every website needs,
    • the 3 biggest mistakes nonprofits make and 
    • 5 proven methods for promoting your website.   


    Jay Wilkinson is the founder and CEO of Firespring, a marketing and internet services company with more than 3,000 clients on 5 continents.  He has educated thousands on topics ranging from marketing to technology to the internet.  He has appeared on CNN and other new programs discussing how emerging technologies affect nonprofits and is considered a leading authority on the proper use of the web as a tool to enhance the core mission of any enterprise. This webinar is open to non-members as well - register today!


    One-Hour Nonprofit Consultation: Free to DSAIA Members

    JPS Nonprofit Strategies Offer 


    JPS Logo

    Is your organization grappling with a difficult board issue, an internal management challenge or just not sure how to move to the next level?  DSAIA is partnering withJane Page-Steiner, President of JPS Nonprofit Strategies, to offer our members a one-on-one confidential consultation.  DSAIA affiliates can now schedule a one-hour clinic with JPS at no cost.  The clinics are designed to assist affiliate leaders with their organizational opportunities and challenges and can be scheduled by completing the form included in the VIP Flyer.  Offer good through June 30, 2012.  


    Save On Calendar Printing & More





    printpelican logoDSAIA affiliates can take advantage of 14 V.I.P. Offers including discounted calendar printing from PrintPelican.  Groups can save an additional 15% on online orders in addition to any current discounts available through the company.  The minimum order is 5 calendars (most with free shipping) and includes the use of their online calendar design software.  Complete details on the offer are available by downloading the Print Pelican VIP Flyer.  A complete listing of V.I.P. offers can be viewed on the DSAIA website.



    Join Us In San Antonio

    It's not too late to register to attend the NDSC's 39th annual ndsc 39convention in San Antonio! Their "Deep in the Heart" convention takes place August 5-7 at the JW Marriott Hill Country. While registration has closed for the Youth and Adults Conference, Brothers and Sisters Conference and Kids' Camp program, registration is open until July 15 for the General Convention and pre-conference sessions. Affiliate leaders might consider registering for Affiliates LEAD, a pre-conference especially for them.


    DSAIA invites those attending to stop by and visit our exhibit booth while you're there! We'll have drawings for prizes and special guests at our booth throughout the convention.  For more information about the convention itself, please visit the NDSC website at, or call Affiliate Relations Director, Sue Joe, at 800-232-6372. 

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
1335 34th St NE
Paris, TX  75462



Monday - Friday
8 am - 5 pm Central

Member Access

Click Here

Powered by Wild Apricot Membership Software