Our Newsletter

  • Tue, August 02, 2016 8:52 AM | Deanna Tharpe (Administrator)

    By Deanna Tharpe

    There are more than 1.5 million nonprofit organizations in the United States with an estimated 20 million board members at the helm. This statement comes from the Stand For Your Mission campaign started two years ago by a coalition of national organizations focused on nonprofit issues and resources. In addition, nonprofits employ more than 10% of the American workforce and represent roughly $1.65 trillion in annual revenues! But here's the real scoop: According to BoardSource's "Leading with Intent" report, only 33% of organizations report that their board members are actively involved in advocating for their missions. While the campaign's main focus is advocacy, DSAIA sees another key message emphasized: Board members are integral to creating the vision and mission of the organization and disengaged board members are not ambassadors.

    Because DSAIA understands the importance of the board in the DS nonprofit (regardless of staff), we strive to provide essential training for board members. Continually working on new and informative webinars and resources is a top priority and one aspect of our mission that we take very seriously. It's time to stand for our missions. At DSAIA we believe:

    • It's time for our boards to be fully engaged in both leadership and fundraising.
    • It's time for our boards to be the absolute best they can be.
    • DSAIA is here to help our members' boards do just that.

    Over the next few months, DSAIA will post on social media regarding this initiative. Many posts will serve as reminders that DSAIA's webinar archive and resource library house hundreds of great resources that will help your local DSA board reach its goal of 100% participation and top-notch advocacy in its community. Read more about the initiative here.

  • Wed, July 06, 2016 6:48 PM | Anonymous member (Administrator)
    Down Syndrome Affiliates in Action announces the launch of its online bookstore as the latest addition to a growing list of resources for Down syndrome nonprofit leaders. Partnering with CharityChannel, the bookstore offers publications on a variety of nonprofit topics such as board governance, fundraising and leadership. 

    CharityChannel was created almost three decades ago as a community of tens of thousands of busy nonprofit-sector practitioners. "Though the professional community has a number of projects," Stephen Nill, CharityChannel publisher explained, "it is perhaps best known for its down-to-earth and practical books written by and for busy nonprofit professionals through our CharityChannel Press project."

    This collection of publications is exactly what will be offered in the new DSAIA Online Bookstore. "We are continuously looking for resources that provide professional training for our members," noted DSAIA Executive Director Deanna Tharpe. "This is just a natural fit since we have had many of the authors present webinar trainings for us in the past. We hope the convenience of having the bookstore located on our site will also be of great benefit to our busy members."

    Highlighted in July is the book The Invisible Yellow Line: Clarifying Nonprofit Board and Staff Roles by Jean Block, who will be presenting a webinar on the subject July 19th.

    While the bookstore is open to the public, DSAIA has partnered with CharityChannel to provide an additional discount of 15% to affiliate members. To take advantage of the discount, members only need to log in to the members section of the DSAIA website. 

  • Wed, July 06, 2016 6:31 PM | Anonymous member (Administrator)

    by Lindsay Radford

    To hear the words “I love you” from a child may not seem all that unusual, but for one mother, it may not have happened without an innovative speech therapy program run by the Down Syndrome Association of Central Texas. The program, now in its second year, is educating more than 30 people ages four to 30.

    “When the 8 year old said “I love you” for the first time and the mom understood him, that was the moment I realize this is why this program exits, said Cameron LaHaise.  “If they didn’t have this program, how long would it have taken for this mom to understood him to say I love you?”

    Here’s what makes this program so unique – It’s a team effort between the association and private speech therapist Heidi Armendariz, who owns her own clinic, Speak Freely.  Together they have written and developed their own curriculum specifically focused on people with Down syndrome.

    “Our goal is that down the road, everyone can walk into a restaurant and order a meal,” said LaHaise.

    The speech therapy program launched in 2015, with 25 people applying for 18 spots.  This year the applicants more than doubled with 54 people applying for 18 spots. 

    The classes fill a critical need for parents who cannot afford private speech therapy or get sufficient help through the schools.  Parents pay $24-dollars a month, the organization pays for everything else.

    Expectations are high for students and parents alike.  While they meet once a month, there is 20 minutes of homework four times a week.

    “It’s not a program where a parent can drop off their kid and go get their hair done,” said LaHaise.  “The parents coming in are eager, taking notes and understanding why the therapist says to do these things.  Then they must practice 20 minutes a day, four times a week.  If the parents do the work, their kids take off.”

    The association never expected so much success so fast.  Interest in enrollment continues to grow and, therefore, so does the need for funding.  The program is currently supported through fundraising and two grants.

    “Had I’d known we’d double this in one year, I would have applied for more grants.  We don’t have the capacity or the money to hold everyone who is interested,” said LaHaise.

    Despite the challenges, the organization is committed to growing the speech therapy program.

    “I love this job,” said LaHaise.  “We are reaching so many families and it’s making a difference.”

  • Wed, July 06, 2016 6:26 PM | Anonymous member (Administrator)

    DSAIA and ColorDash have partnered to offer an incredible (and popular) turn-key fundraising solution to our members. ColorDash is a family-friendly, untimed 5K Run/Walk that welcomes all shapes, sizes, ages, and abilities. Runners start with a white tee and at each kilometer participants are splashed with a different color paint - blue, green, yellow, orange, and pink. The ColorDash celebrates your community while brightening your outlook on life through approx. 3.1 miles of laughter, color and fun.

    A few DSAIA affiliates are already utilizing the ColorDash 5K in addition to its annual awareness walk.

    So what's the deal? DSAIA's partnership with ColorDash reduces the administrative fee for affiliates by $500 (20%). Plus, host organizations reap the benefits of their labor with 50% profits from tickets/merchandise as well as keep all local sponsorships and donations raised.

    Information on ColorDash and the partnership discount can be found here. Walk, Run, Dash, Rock n' Roll..whatever your method, get out there and Let The Color Move You™.

  • Thu, June 02, 2016 3:28 PM | Anonymous member (Administrator)

    In 2015, Down Syndrome of Louisville was looking for a challenge and they found it.  After 12 months of planning, reviewing, organizing and developing the 130 outcomes spanning the DSAIA’s Accreditation Checklist, Down Syndrome of Louisville completed and received is Gold Accreditation.

    Lisa Holmes, Director of Programming and Operations at Down Syndrome of Louisville, explained that the organization created its strategic plan in 2015 to challenge itself. “We wanted to achieve DSAIA Accreditation and our other goal was to create world-class programming,” she said. “The Gold Accreditation was a stepping stone to achieve that goal.”

    The biggest challenge, Holmes joked, was getting over the shock of the six-page accreditation check list. “It was a little intimidating,” she said. It was worth it, though. Said Holmes: “It’s been one of the best and most defining things I’ve done in my adult professional career.”

    For the more than 35-year-old organization that serves upwards of 500 members in northern Kentucky, the process to meet DSAIA’s rigorous accreditation standards was extremely intentional.

    Holmes explained that the process wasn’t done just to meet the accreditation goals. “We really looked at all our documentation and asked ourselves is this what we actually do and is it meaningful,” said Holmes. “We wanted to make sure everything was accurate. That took a lot of time.”

    Holmes made sure to spend time each week dedicated to the accreditation project to keep it moving. Though, in reflection, she admits she should have created a committee to share the work. Her advice to other DSAs embarking on accreditation: “Create a committee to work on it to help get the work done quickly. Farm out different aspects of the checklist to different specialists – for example, the finance committee could complete the financial pieces.”

    Now that Down Syndrome of Louisville has reached the Gold Accreditation mark, Holmes expects the achievement will give the organization a leg up in fundraising. “I think folks will feel better about writing a check to us for a donation. And the rigor of the whole process will give us an advantage in grant writing.” Furthermore, the accreditation will garner media exposure that will help increase our outreach to members and awareness of Down syndrome in the community.

    If you are a fan of horse racing or basketball, you know that by nature Kentuckians are competitive. And Down Syndrome of Louisville is no exception. “When I got the information about accreditation, of course I said, ‘We’re going for the gold,’” said Holmes. She encourages any affiliate to work on accreditation in order to highlight their achievements and what they are doing for their community. “Whether it’s a storefront or a basement card table, there is great programming going on throughout the country,” Holmes said. “And if you’re doing the very best you can, you are successful.” DSAIA Accreditation proves that you are doing your best.

    For more information about Down Syndrome of Louisville’s road to accreditation, you can contact Lisa Holmes at 502-495-5088 or More information about DSAIA’s Accreditation Program, including the Accreditation checklist, can be found online at

  • Wed, June 01, 2016 1:25 PM | Anonymous member (Administrator)
    The Up Side of Downs of Northeast Ohio, a DSA in Cleveland, opened a new location in May, complete with spaces for meetings and classes, and a storefront selling products by local artisans with Down syndrome. How did they do it? Are you ready to move to a bigger space? Here are the five steps to growing into space that will help your affiliate meet all the needs of the local Down syndrome community.

    1. Launch new programs that will fill the space.

    Years prior to opening the new center, The Up Side of Downs launched several new programs for its community. Before long, “we didn’t have the space [at our current location to hold the programs] and it was difficult to find space around town,” said The Up Side of Downs Executive Director Toni Mullee. And in 2014, the growing affiliate piloted The Learning Program. Added Mullee: “It was so successful, and we knew we needed a dedicated space to do that effectively.”

    2. Get full support from your board.

    Mullee emphasizes the need for an engaged board that not only fully backs the project but also supports the staff. “We have a really great board,” said Mullee. “You cannot succeed if you don’t have a board there to say ‘yes.’” The entire process took about a year from board approval to opening.

    3. Engage your membership.

    “We’ve determined that there is a lot of potential support in the community,” said Mullee. Whenever needs or challenges arose, the staff at The Up Side of Downs would ask their membership for help. “Tap your membership,” advises Mullee. “More often than not, we got what we needed.”

    4. Involve the community in the build.

    The Up Side of Downs built a team of vendors, consultants and contractors from its most vested stakeholders – its families. “We determined that there [was] a lot of potential support in the community,” said Mullee. Of course there was financial support in the form of grants and donations. But also It takes a lot of resources to find, lease and build out a new center. The organization found many of that support from untapped resources within its membership and around the community, including the real estate agent, the engineer who drew the plans, and the vendor that supplied the retail store fixtures, among others. “It’s amazing the resources you can find that are out right there in your community,” said Mullee.

    5. Fill the center with great programs and value.

    The Up Side of Downs is especially excited that its new center is located in a retail shopping building, which gave it the opportunity to open a retail store, Artful 21. “We are selling items from artisans with Down syndrome - local and from across the country – to spread awareness of the abilities of people with Down syndrome.” Self-advocates eventually will staff the store when it officially opens later this summer.

    In addition to the retail space, The Up Side of Downs’ new center has a dedicated children’s classroom for book clubs, summer enrichment programs, art classes and The Learning Program. A general program area provides room for parent support groups, programs for adults with Down syndrome as well as the organization’s board meetings.

    For more information about The Up Side of Downs’ new location, contact Toni Mullee at or 216-447-8763.

  • Sun, May 01, 2016 10:46 AM | Deanna Tharpe (Administrator)

    Ds-connex is excited to offer 2 additional scholarships to use their peer-to-peer fundraising software Stride for qualified walks in 2016. These scholarships will cover 100% of the fee for use of Stride as well as technical and social media support and design services. Please visit our website to learn more about the ds-connex organization and Stride. The value of this scholarship is $5,000 per organization. 

    To qualify for the 2016 Spring scholarship:

    1. Your organization's operating budget must be $150,000 or less,
    2. Your organization must be a member of DSAIA, and
    3. Your organization has not previously received a scholarship from ds-connex.

    To be considered, you need to complete this application by Thursday, May 12, 2016. The two winners of the scholarship with be jointly determined by DSAIA and ds-connex and will be announced on May 19, 2016.

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    • Sun, May 01, 2016 10:44 AM | Deanna Tharpe (Administrator)

      Recently, the National Down Syndrome Society (NDSS) launched a first of its kind employment campaign - #DSWORKS™  - at the National Press Club in Washington, DC with the help of Members of Congress, business leaders and stakeholders in the disability community.

      NDSS' #DSWORKS™ is designed to educate the general public about how adults with Down syndrome are employable individuals and should be included in all aspects of the work force, to encourage corporations and businesses to invest in hiring people with Down syndrome and to increase the number of opportunities for individuals with Down syndrome to work in meaningful and competitive employment settings. As part of #DSWORKS™, NDSS also launched an employment survey that takes a deeper look into employment in the Down syndrome community nationwide. Involvement from employees 18 and older with Down syndrome is needed to make sure we have the most accurate information possible. Learn more about the initiative here.

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      • Sun, May 01, 2016 10:44 AM | Deanna Tharpe (Administrator)

        DSAIA has partnered with Bristol Strategy Group to bring Down syndrome association leaders a comprehensive development training program at an incredible price. Fundraising the SMART Way is the product of Ellen Bristol and Linda Lysakowski (ACFRE), creators of the Leaky Bucket Assessment and respected authors/consultants. The "shared program" model, created specifically for nonprofits such as those in the DS community, allows five organizations to participate in each group with one private coaching session included. The full program consists of five 90-minute live, virtual workshop sessions scheduled on a weekly basis followed by six 60-minute live, virtual coaching sessions scheduled bi-weekly. Ongoing support is offered after the 6-month program is complete if needed. 

        While Bristol Strategy Group charges up to $25,000 or more for a private training program, this shared program model allows for smaller organizations to take advantage of this training for only $5,000. DSAIA members receive an additional discount of $1,000. (Nonmembers receive a full year membership in DSAIA when they purchase the program.) Groups registering prior to May 15th can take advantage of a special "early bird" discount of $500, bringing the cost down to only $3,500 for DSAIA members - a true deal. 

        Want to learn more about this VIP Offer? Click here - and don't forget to take the Leaky Bucket Assessment for a free consultation with Ellen and Linda!

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        • Fri, April 01, 2016 10:48 AM | Deanna Tharpe (Administrator)

          What do other Down syndrome association executives make? What about program directors? Does it depend on their budget or membership? What about benefits and evaluation? These are just some of the questions we were asked at DSAIA on an ongoing basis - and questions that came up during a Leaders' Circle last year. Rather than speculate, that Leaders' Circles worked with DSAIA to create a comprehensive compensation survey for Down syndrome organizations. 

          The new DSAIA Staff & Salary Report is now available to DSAIA members. It includes data from 80 Down syndrome organizations and is broken down into budget categories for ease of use. DSAIA members can view the report by downloading it in the Event section of our website.

          The document is available to nonmembers - click here for more details.

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          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

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