Our Newsletter

  • Sun, February 01, 2015 3:08 PM | Anonymous member (Administrator)

    Is The Conference Your Board/Staff Retreat?

    The annual DSAIA Leadership Conference is more than a convention, it's a board retreat and staff development opportunity. The J.W. Marriott Resort & Spa is a beautiful location for the upcoming event   but are you utilizing the event to create a "board/staff retreat" opportunity for your organization? Packed with professional speakersfrom both the Down syndrome and nonprofit community, it's an amazing value to your whole team.

    And while the hotel may pamper you with spa options, DSAIA will surround you with incredible networking options, delicious meals, and some great technology perks.  Keep connected to your organization or home with free WiFi in your room and on the conference floor and utilize our new mobile app to make your experience more engaging. Register today!

    Global Down Syndrome Foundation Grant Survey

    Providing timely and important feedback for our members and from our members is an important aspect of the work of DSAIA. 

    To this end, we hope you will support us by taking five to ten minutes to fill out a survey that will help one of our founding members – the Global Down Syndrome Foundation. The survey is aimed to improve their existing local Down syndrome organization outreach, existing grant program and to ascertain if an additional grant program would be welcomed.

    Access the survey by clicking here. Thanks so much for supporting DSAIA and our members!

    NDSS & DSAIA Announce Stephen Beck, Jr. Scholarship

    Steve Beck Jr., was a part of DSAIA from its birth almost ten years ago, and most recently the former Vice Chairman of the National Down Syndrome Society (NDSS).  His life was dedicated to bettering the lives of individuals with Down syndrome and the organizations that serve them.  We are proud to have worked alongside him and we all benefit from his successes.  He will be dearly missed. 

    In honor of his many accomplishments and to encourage Down syndrome affiliates to pick up the reigns, NDSS and DSAIA are proud to announce the Stephen Beck Jr. "ABLE Act" Affiliate Advocacy Scholarship. The winner of this honor will receive a one-year membership to DSAIA for their organization valued at $995.  Applications will be accepted until February 25, 2015.  Applicants should complete this brief application. The winner will be announced Sunday, March 8th at the DSAIA Affiliates In Excellence Breakfast by the leadership of NDSS at the Annual DSAIA Leadership Conference in Las Vegas, Nevada.

  • Thu, January 01, 2015 3:21 PM | Anonymous member (Administrator)

    World Down Syndrome Day: New Campaign Launched

    In early December over 50 leaders from Down syndrome organizations across the United States (and beyond) attended the webinar launch of a new awareness campaign created for World Down Syndrome Day. The campaign, which was created by a coalition of national and international Down syndrome organizations, is based on the concept of "Random Acts of Kindness" and has met with good response from the community. 

    Work continues on the toolkit, but interested organizations (or individuals) can view the webinar here. The toolkit can be downloaded during the webinar replay or by clicking here. Expect additions to the toolkit in the coming months including a Spanish translation.

    Why Not Make Saving Money for Your

    Organization Your New Year's Resolution?

    Just 8% of Americans achieve their New Year's resolution. That is unacceptable to Down Syndrome Affiliates in Action. You have your strategic plan in place...let's make it EASY to succeed in 2015 by resolving to save money for your Down syndrome organization. 

    Members of DSAIA have been saving money since the launch of the trade association in 2010. Whether it's savings on office supplies, insurance, event software or credit card processing, there is certainly an opportunity to start off the year saving. And in 2015, DSAIA has resolved to research and add even more VIP (Value-Incentive-Purchase) Offers for our members. (Want to get involved? We have VIP Committee openings!)

    And consider passing on savings to your membership as well. Check out two offers aimed at families for legal services and monitoring devices. You'll find all of the 22 available offers here.

    NDSC and DSAIA Team Up for Adult  Sibling Toolkit Webinar

    In February, NDSC and DSAIA are teaming up to help you help adults with Down syndrome and their families. We will be presenting a webinar on customizing the NDSC adult sibling toolkit for families entitled Making the Adult Sibling Toolkit Work for Your Members.

    As you know, people with Down syndrome are living into their 40s, 50s, and even 60s, and for the most part, they continue to live in the family home with their parents. We recognize that for many families, not just those affected by Down syndrome, conversations between parents and adult children on the topics of death, medical incapacitation, healthcare directives and wills are difficult. They are often put off, and in worst cases these conversations NEVER HAPPEN.

    Adult siblings who want to be involved in their brother or sister's life but are not familiar with the details involved can use this toolkit to have discussions with their parents. They can learn how to be an effective advocate, friend, and perhaps 
    caregiver for their sibling after their parents are no longer able. 

    As an affiliate, customizing the Adult Sibling Toolkit with state-specific laws regarding wills, trusts, and guardianship, and local resources for transportation, employment, independent living, etc., will be invaluable to your older members. We will show you which sections most frequently need your affiliate input and strategize methods for getting the toolkit into the hands of families and most importantly, help them to follow through with the task of completing it. 

    Register today! (This is an open webinar for members and nonmembers alike, sponsored by the National Down Syndrome Congress.)   

  • Thu, May 31, 2012 9:51 AM | Anonymous member (Administrator)

    Hiring Staff: A New Trend in the DS Community? 


    Employee of month sign 
    Several DSAIA affiliates have hired staff in the last few years. Some are moving from part-time to full-time positions while others are bringing in an employee for the first time. DSAIA spoke with two groups who have hired within the last few months.
    For the Down Syndrome Association of Greater Charlotte (DSACNC), a long-range planning breakout session at the 2008 DSAIA Conference was the beginning stage of hiring staff. The organization formed a Long-Range Planning Committee after the conference. Terri Leyton, DSACNC Program Director, explained that one of the committee's recommendations was to hire staff. "Ultimately, the Long-Range Planning Committee and the Board of Directors felt that if our organization was to grow and continue to provide quality programs to our members we would have to hire someone to take us to the next level," she said. After hiring two part-time employees in 2010, DSACNC recently hired their first full-time executive director this year.
    For the Down Syndrome Association of Delaware (DSAD), the story might be familiar to a lot of DSAIA members. "The board was getting burned out," said Karen Marsh, DSAD President. "A few of us were doing everything year after year. If we did get volunteer help, the task/program was often not a priority." The decision to hire staff was not a decision DSAD rushed into. The organization has been talking about hiring staff for more than five years. According to Marsh, the reaction to their new hire has been fantastic.  
    Staff titles and job duties are a priority when planning a new hire. DSAD made the decision to hire a part-time program director. "After talking with numerous other affiliates, we decided that made the most sense," said Marsh. "Programming is the heart of what we do. Getting the programming done would free up our board to do other things - grants, other fundraising opportunities, chairing committees and recruiting members to get them involved." DSACNC hired a program director in 2010, but moved to hiring a full-time executive director in 2012 along with a contract employee to run their summer camp. "We contracted the services of a consulting firm that specializes in nonprofits both in 2010 and 2012 to help in the hiring process," said Leyton of DSACNC. "Our hiring committee consisted of board members, people from within the organization and a community partner with Human Resources expertise." DSAD created a hiring committee from board members, let them review applications and do the initial round of interviews. The final interviews were with the president (Marsh), vice-president and fundraising chair. "It helped a lot to see other affiliates' job descriptions," explained Marsh, who utilized the DSAIA Repository as a resource in the planning stages. "We had committee chairs write down areas they needed help. We then created our own description."  
    DSAD hired a recent graduate as their program director with the hope that she will "roll" into an executive director position in the next 2-5 years. While the organization advertised the position to their leadership and members as well, Marsh said that no one from within applied for the position. DSACNC did hire from within their organization, which is very common. "Although we had many applications come in from people both within and outside our organization," said Leyton, "the hiring committees found the best candidates for three of the four positions came from within the organization." Kathryn Lariviere (who was hired as the new executive director and was a former board member) said, "I feel like I've been interviewing for this position for the last six years!"

    Gaps in the Maps Survey Released 


    Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas. We need YOUR help in making this project a success by doing the following:
      1. Complete this BRIEF survey by clicking here.
      2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
      3. Tweet and share the survey link with other group leaders via social media!
      4. Talk about this project with at least one organization in the Down syndrome community today.
      5. Be creative! The more we share this project, the more families will receive the support and information they deserve!
      Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click herefor all the latest project details or visit us on Facebook
      For more information, contact Deanna Tharpe, DSAIA Executive Director, at or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at or 804-920-9643. 

    What To Know When You're Hiring


    Hiring staff does have measurable benefits.  According to Maureen Gallagher and Louise Borke of Massachusetts Down Syndrome Congress (MDSC), it not only frees the board up to focus on governance rather than day-to-day operations, but also provides more responsiveness to your membership and consistency in your quality and programs.  If your decision is to hire staff, plan to devote 3-6 months to create the strategic plan, determine what position to hire first, and determine what you can afford (including salary and benefits). 



    Try researching other similar organization and the competitive landscape for professional staff in your area. Be sure and review the DSAIA 2011 Demographic Survey which includes staff number and salary information. Before you start hiring, ensure you have enough funds to pay for the staff person and related expenses for at least one year. For more information from MDSC's presentation on Hiring Staff from the 2012 DSAIA Leadership Conference, visit the DSAIA Repository’s 2012 Conference Powerpoints section.


    To get ahead of the tax and regulatory issues regarding hiring your first staff person, review the information from Charlene Hill's (DSAIA Treasurer) presentation from the 2012 Conference entitled "We've Hired Staff: Now What?". Both the MDSC and Hill presentations are full of information sure to help you as you start this journey. A large variety of employment documents (including Employee Manuals, Applications, Evaluation Tools, etc.) can be found in the DSAIA Repositoryunder Operations and Administration/Employees.

  • Tue, May 01, 2012 10:53 AM | Anonymous member (Administrator)

    What Makes Your Readers "Click" 


    In a recent analysis of their newsletter, Madison Area Down Syndrome Society found what stories generate the most interest to their readers. It is harder and harder to compete with the amount of information that your members are bombarded with on a day-to-day basis, so knowing which stories are more likely to pique their interest is a vital bit of information. 


    So, what did MADSS find? Looking at a year of click-throughs, they found that the majority of "opens" were on human interest or inspiring stories about people with Down syndrome. Next on the list were family and personal accounts of living with a child/family member with Down syndrome and parenting a child with Down syndrome.  Other topics are listed in order below:

    • Medical research (the recent pre-natal article got quite a few hits)
    • Volunteer opportunities
    • Government bills associated with disabilities
    • Maintaining good health for people with Down Syndrome
    • Recommended area providers for MADSS members

    While interest seems to mainly be in stories about other people, MADSS' newsletter volunteer Alyssa Skiba noted that members are also interested in what the government is doing to help people with disabilities and how parents/family members can contribute to the healthy growth of their children. 


    Thanks to MADSS for sharing their research.  Want to learn more about what makes a great newsletter? Read this interesting article about how to avoid the most common newsletter mistakes.

    Are You Covered? 


    Your board members are

    volunteers who often make difficult decisions. That is why your organization should have Directors and Officers (D&O) insurance to protect them. The question is not "can you afford it" but rather "how can you not?"  Board members can be sued individually or as a group over a variety of reasons. Can your organization withstand a lawsuit and the costs involved?


    Not having such insurance can make it difficult to attract and retain good board members, who simply cannot afford to serve if they run such risk to their personal assets.  Some professionals are unwilling or unable to serve on a board without D&O insurance. 


    Learn more about coverage for both D&O and General Liability insurance by watching our two-part series entitled "Are You Covered?" in the DSAIA  Repository.  For discounts on insurance for your group, be sure and download the V.I.P. Insurance Discount Offer



    Self-Advocate Leadership A Top Priority


    david with group ndsc

    DSAIA Board Members (from left to right): David Egan, Joe Meares & Doris Erhart

    Including self-advocates in the board room successfully is the goal of the newly formed Self-Advocate Leadership Committee.  The committee, co-chaired by DSAIA board members Doris Erhart and David Egan, presented sessions at the 2012 DSAIA Conference and is now hard at work developing resources and training for affiliates. 


    The committee has already started compiling items to be included in a "toolkit" for boards. The toolkit's purpose is to give groups the necessary resources to make self-advocates a productive member of the board. Following the formulation of the toolkit, the committee plans to present a training webinar and present breakout sessions at the 2013 conference in Cincinnati.


    "While we have a good starting number," explains Doris Erhart, "we still need committee members with a wide range of backgrounds. We would like to have affiliate board members both with and without Down syndrome as well as those from groups who do not have a self-advocate on their board." If you are interested in joining the committee, contact Doris Erhart or David Egan today.

    Down Syndrome Affiliates in Action

    P.O. Box 2122

    Bismarck, ND 58502



    Copyright © 2012 Down Syndrome Affiliates in Action


  • Mon, April 02, 2012 2:46 PM | Anonymous member (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 2:48 PM | Anonymous member (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 11:27 AM | Anonymous member (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 11:26 AM | Anonymous member (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 11:24 AM | Anonymous member (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 9:49 AM | Anonymous member (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!

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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Missoula, Montana   59802



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