Our Newsletter

  • Mon, April 02, 2012 3:46 PM | Deanna Tharpe (Administrator)

    DSAIA Board Member Speaks at United Nations 


    David Egan, board member of both Down Syndrome Affiliates in Action (DSAIA) and Down Syndrome Association of Northern Virginia (DSANV), had the opportunity to speak at the United Nations on World Down Syndrome Day. "David is a phenomenal speaker," said Deanna Tharpe, DSAIA Executive Director.  "His presentation at the U.N. was full of positive images, real issues, and a call to action.  It was a delight to watch him and know that his message was being heard by so many around the globe."
    David Egan @ The United Nations: World Down syndrome Day 03/21/2012
    David Egan @ The United Nations: World Down syndrome Day 03/21/2012


    It was the first time the United Nations has recognized the March 21st event.  "For too long, persons with Down syndrome, including children, have been left on the margins of society," UN Secretary-General Ban Ki-Moon said in a message to mark the World Day.  For decades the UN has worked to ensure all persons are given the rights they deserve, and in doing so, they adopted the Convention on the Rights of Persons with Disabilities in 2006.


    Ban applauded the global partnership of those who gathered to bring awareness and help bring initiation to World Down Syndrome Day, saying that "let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all." 


    David was in good company as a great number of self-advocates and professionals spoke during the event.  To watch the entire podcast, click here.


    Quarterly Town Hall Meeting Planned 


    Down Syndrome Affiliates in Action is intent upon creating opportunities for our members to give us feedback in the form of questions, comments or suggestions. Continuing on our "Town Hall" held at the conference each year, DSAIA has planned a conference call to be held quarterly for our membership.  
    The call is scheduled for Tuesday, April 24, 2012 at 7 pm Eastern (6p Central/5p Mountain/4p Pacific). The meeting will begin with a quick report of DSAIA activities and then move into audience participation.  DSAIA encourages our affiliates to have at least one individual in attendance at each meeting and come prepared with comments or questions.  Register today!



    Repository Hits the 1,000 Item Mark 


    successDSAIA's Education & Training Committee set a goal in late 2011 to work toward housing 1,000 items in the Repository by the end of 2012.  Now, the committee will have to revise their goal as the Repository just passed the 1,100 mark!   The latest items to be added to the Repository include employee/program evaluation tools, marketing samples and supporting documents from the 2012 DSAIA Leadership Conference.

    The Repository recently underwent a facelift in order to help members access all folders/documents directly from the DSAIA website.  One other small change that you will notice is the continued sub-categorization of each topic folder. The Education & Training Committee still needs your help.  Take a moment to send in your documents for inclusion.  In high demand are program ideas, newsletter articles and even pictures!  (Remember that all submissions of articles and pictures will require permission by author/subject.)  Send your submissions to 
  • Thu, March 08, 2012 3:48 PM | Deanna Tharpe (Administrator)

    DS Leaders Converge on Washington 


    DC 2012 Logo
    Leaders from across the nation arrived in Washington, D.C. last week to attend the Down Syndrome Affiliates in Action Leadership Conference and the National Down Syndrome Society's (NDSS) Buddy Walk on Washington. After spending Thursday, March 1st visiting legislators on Capitol Hill, 225 individuals spent time learning, sharing and networking to improve their service capacity to their membership at the annual conference.  


    Highlighted by a much-anticipated opening plenary session

    dr bev
    Dr. Browning addresses attendees during Opening Plenary.

    by Dr. Bev Browning, author of Grantwriting for Dummies, the conference brought rave reviews.  "It was such a great feeling to know that my Board member (who paid for herself) was going to have a great time and that it would be worth her time and money," said Nancy Litteken, Club 21 Learning & Resource Center.  "And it was! She loved it.  All the members of the committee were warm and helpful and communicated how much every member was valued and an important part of a larger community."


    While attendees will take their information home to their organizations to process and implement, the DSAIA Conference Committee will begin preparations for February 21-24, 2013 in Cincinnati, Ohio.  Save the date on your calendar now!


    DSAIA Members Receive New Grantwriting Resource


    ecivis logo 

    Today, nonprofits struggle to secure increasingly competitive

    and hard-to-find grants. With fewer resources and growing demands, nonprofits have had to be resourceful on all grant seeking fronts. Last week during her plenary presentation, Dr. Bev Browning announced DSAIA's newest VIP Program: subscriptions to Nonprofit One-Stop by eCivis for ALL members as a no-cost benefit of membership.  
    Nonprofit One-Stop by eCivis provides top-quality research and training to nonprofit organizations from top grant professionals. Nonprofit One-Stop isn't just an electronic catalog of funder and grant profiles. It's a professional research team providing you with analysis of what a nonprofit organization needs to survive, thrive, and win! Through this DSAIA VIP Offer, you receive nearly $6,500 in value at no cost to your organization! Let One-Stop open the door to your group's sustainability by taking advantage of this incredible offer.  To find out more about the program, click here.  If you are a member of DSAIA and have not received your invitation email, please contact us today.

    21 Quotes in 21 Days 



    DSAIA is proud to promote World Down Syndrome Day through the "21 Quotes in 21 Days by People with Trisomy 21." The campaign utilizes email and social media to spread a great awareness message.  Special thanks goes to Gail Williamson of Down Syndrome Arts and Media( for coordinating the campaign this year for DSAIA.  To submit a quote for consideration, contact Gail at today.  If you are not receiving the daily emails, please subscribe to our mailing list today.  Be sure to share these with your membership via Facebook share or Twitter. 


    Back By Popular Demand:  Great VIP Savings! 


    Bobux Baby Shoes Offer 


    bobux online jpg

    Thinking about marketing your walk to new parents with a Baby Bootie Promotion?  Or perhaps you're looking for an extra item to place in your Welcome Baby Package?  Back by popular demand, he DSAIA/Bobux Baby Bootie Offer pairs a great product with an attractive price. 


    DSAIA members can take advantage of this quality product with great savings!  Regularly priced at $30 per pair, your organization can purchase Bobux shoes for only $14.25 per pair.  You'll save over 50%!  And some discontinued styles will be available for even less!  Prices do not include shipping. Offer valid until December 31, 2012.


    To view a video detailing a great "baby shoes" promotion aimed at increasing your walk revenue and new parent attendance, click here.



    Band of Angels Package 


    band of angels

    Save $30 when you purchase a Band of Angels customizedsupport package as a DSAIA member!  Receive the award-winning Common Threads soft cover book,My Baby Can! 18 Month Developmental Calendar(boy or girl cover), Inspirational DVD, Hi, I'm Benchildren's book, and both a large and small 'Halo with a Twist' pin!  The total retail value of this package is $65.

  • Tue, February 07, 2012 12:27 PM | Deanna Tharpe (Administrator)

    Mile High Hires Self-Advocate


    MHDSA 30 yr logoMile High DSA recently hired its first employee with Down syndrome. "After 30 years of service to the community and specifically programs that promote the inclusion, independence, and empowerment of those living with Down syndrome, we felt it was important for MHDSA to practice what we preach," said Mac Macsovits, MHDSA Executive Director. "We expect others in the community to hire, train, and employ those with Down syndrome, yet we were not doing that ourselves. The time had come to make this right."


    An eight-month process included planning for long-term funding of the position and a vigorous hiring process including interviews by staff. Macsovits explained that an offer was made based on the needs of the organization, not the needs of the candidate. "This is a staff member," he said, "not a person with Down syndrome. This staffer has real responsibilities and is expected to perform.


    For those groups considering adding an individual with Down syndrome to their staff, Macsovits offers this advice:


    1) It can be a very difficult decision when you have multiple qualified candidates. Be prepared to make that decision.

    2) You MUST have a specific job description with requirements. This is not a feel good position; you are paying someone to do a job.

    3) Make sure that the parents understand this is not a "bring your parents to work" environment. The person must get to work themselves and complete their work themselves. Mommy & Daddy are not included in that other than possible transportation.

    Does your organization have a self-advocate on staff? Tell us about it!

    Learn From the Pros at DSAIA 2012

    DSAIA is pleased to bring two profssional speakers to DC to present at the Friday and Saturday plenary sessions. Dr. Bev Browning, bestselling author, will present at the Opening Session on Friday morning. Her presentation entitled "Building Your Organizational Capacity as an Affiliate: Why It's So Important To Be Aggressive" will certainly start the conference off with a bang.

    PamelaGrowPhotoSaturday morning's plenary speaker will be Pamela Grow, owner of Grow Consulting. Author, coach, copywriter and nonprofit marketing consultant, Grow segued from nearly seven years of working in programming and communications into the world of fundraising. She is the founder of #smNPchat on Twitter - the only Twitter chat geared specifically to the small nonprofit development shop - and she co-hosts Small Shop (a regular column of Fundraising Success Magazine). Her presentation is entitled "Doing It All and Doing It Well: Are You Focusing on What Matters?"

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

    Streamline Your Online Walk Registration While Saving Money


    EZ Event Solutions: Tailor-Made For Your Walk


    ezeventEZ 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. The EZ Event Solutions fee structure is based on a percentage of an event's Usage Amount (UA) and no setup fee which makes this offer even more valuable.


    Their online system was built specifically to provide the services for events that require team pages and team fundraising efforts. Several Down syndrome groups across the country are utilizing their software with great success. EZ Event Solutions offers their services to DSAIA members to help your organization's event be a success.


    Download the EZ Event Solutions flyer to take advantage of this incredible offer. To find out more about other VIP Programs, visit our website today.

    Board Development Series Continues


    DSAIA's latest workshop series continues in February with Board Orientation, presented by Katherine Campbell. This webinar will focus on how to prepare your newly-recruited board members for their role as engaged leaders and supporters for your organization. We will explore the full range of information that should be covered in orientation, as well as creative options for format, timing, and who might be involved. Implications for long-term retention and accountability will also be discussed. The webinar will include a one-hour presentation followed by 30 minutes of Q & A and is scheduled for Tuesday, February 21st at 8 pm Eastern.


    This month's presenter, Katherine Campbell, is the Executive Director at Council for Certification in Volunteer Administration and owner of Skye Consulting. She is currently serving as adjunct faculty at Virginia Commonwealth University and University of Virginia where she designs and teaches courses in the Nonprofit Management Certification Program. She specializes in assisting public and private nonprofit organization in accomplishing their mission through effective management of people and resources.


    Four webinars will follow including:

    • 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! It's not too late to register. Those registering for the series will be given an opportunity to view previous webinars in the series (which will not be available online until June). A Certificate of Completion will be given to attendees at the conclusion of the series. To see a complete listing of the dates/times, visit the DSAIA website.

  • 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.




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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