Our Newsletter

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  • Tue, August 06, 2019 9:00 AM | Anonymous member (Administrator)

    In February of 2019, Nina Fuller, Founder and Director of SMILE on Down Syndrome in Evansville, IN, attended the Down Syndrome Affiliates in Action conference in St. Louis, MO. Upon walking out of her final workshop of the day, she found herself inspired, ready to learn, and grow herself and her organization more. What she did not realize at that moment is that all she needed was something salty, something sweet, something healthy, and something to drink.

    At the DSAIA Conference, Fuller had been introduced to the concept of a Pop Up Snack Shop, where people with disabilities sell prepared snack boxes. (This is a program started at Down Syndrome Association of Greater St. Louis.) As she munched away on her snacks, she dreamed of how this program could benefit her members. Fuller realized that as teens and young adults in Indiana transitioned from high school into adulthood, they needed real-life opportunities to develop social, interpersonal, and job-related skills; they needed safe ways to step outside of their comfort zone to grow. She brought the Pop Up Snack Shop concept back to her organization and they immediately went into action. Within a few months, Fullers’ self-advocate program was assembling their SMILE Snack Packs, sealed with their SMILE logo. From there, they took their idea to the public selling to a wide variety of vendors, each box for a suggested $5 donation. On their first day, a six-hour event, they sold all but 13 of the 30 SMILE Snack Packs in the first three hours.

    Fuller notes that while the SMILE Snack Packs program has had many successes, it has not come without its fair share of learning, too. This included an event where only three self-advocates were available, requiring some to work “overtime” and fill in gaps. Also, self-advocates are expected to sell and market the SMILE Snack Packs. Some are naturals at this, while others struggle to even get out a “thank you” to a customer. As time passes, Fuller notes the confidence of each self-advocate is growing. Getting SMILE Snack Packs off the ground has required a lot of teamwork, self-reflection, and dedicated employees to get the job done, but it’s been a rewarding opportunity for all.

    The community response has been overwhelming. People have been excited about the idea of SMILE Snack Packs and often stop to ask questions and learn what SMILE on Down Syndrome is all about. Fuller states, “I love watching our self-advocates interact with total strangers, making eye contact, being the first to reach a hand out to connect, and most of all, showing everyone that people with Down syndrome are hard workers, confident, relational, and downright delightful.” The program hopes to increase the number of regular vendors over the next year so that SMILE on Down Syndrome can help more individuals with Down syndrome grow and have an even larger impact on the community. Regardless of where SMILE on Down Syndrome pops up next with their SMILE Snack Packs, you can be sure to find a warm, friendly face and something salty, something sweet, something healthy, and something to drink.

  • Tue, April 09, 2019 1:20 PM | Anonymous member (Administrator)

    Down Syndrome Association of Jacksonville's (DSAJ) Young Professional Group presented their annual gala event (Illuminate the Night) on March 30th with a very special focus - celebrating 30 years since the organization was founded.

    And while you might think the night would have been filled with nostalgia and accomplishments of the past, it wasn't. In fact, most of the evening was dedicated to all the new things (and future goals) that DSAJ is working on right now.

    With its new logo proudly displayed, the organization shared a video tour of their brand new facility complete with their Career Solutions Training Academy whose goal is to provide the skill sets and knowledge needed for individuals with Down syndrome to become successfully employed.

    Using an array of methods, including small group interaction, role-play, videos, and written/oral activities, DSAJ hopes to effectively and realistically prepare individuals to be competent employees in the community workforce. Included are these five modules: Human Resources & Social Skills, Retail Skills, Office Skills, Food Service Skills, and Grocery Clerk.  

    Learn more about the program in this interview with DSAJ Board President Jeff Leach and his family..including daughter Sydney.

    Good luck to DSAJ - we can't wait to see what you'll do in the next 30 years!

  • Thu, March 21, 2019 7:00 AM | Anonymous member (Administrator)



    Advocates for Down Syndrome Visit Austin To Speak with Legislators

    AUSTIN, TX (MARCH 21, 2019) – Over 80 people from across the State of Texas will be in Austin today for the first World Down Syndrome Day Celebration and  Advocacy Day urging legislators to remember individuals with Down syndrome as they debate and pass legislation. Advocates from Down Syndrome Texas will call on the Texas House of Representatives and Senate to support people with disabilities through bills in special education, employment, transition and higher education.  They will also join the Texas Advocate rally to end Institutional Bias, asking the Texas Legislature to move state funds from State Supported Living Centers to community-based services for people with intellectual and developmental disabilities.

    Legislators are doing their part to raise awareness.  Representative Joe Moody (D- El Paso) will introduce HR800, a proclamation recognizing World Down Syndrome Day, authored by Representatives Brooks Landgraf (R-Odessa), Mary Gonzalez (D-El Paso), Tan Parker (R-Denton) and Phil King (R-Weatherford).  The proclamation notes in part that "Much progress has been made [to] secure the rights of people with Down syndrome to live at home, attend schools, access appropriate health care, get married, find work, and contribute to society... all Texans are encouraged to take part by helping to build a culture of greater respect and inclusion for those living with Down syndrome."

    Rep. King's office will also be handing out socks to all the Texas State Representatives in keeping with the day's campaign to Rock your Socks and celebrate difference.  Community members should wear colorful, crazy socks, and use them as a conversation starter for discussions about inclusion and acceptance, following the 2019 World Down Syndrome Day theme to "leave no one behind."  

    Down syndrome is a condition caused when a person has three copies of the 21st chromosome, therefore World Down Syndrome Day is celebrated on the 21st day of the third month. 

    Down syndrome is the most commonly occurring chromosomal condition; one in every 800 babies in the United States is born with Down syndrome.  Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. 

    To learn more about Down syndrome and resources available in Texas, visit  For more information about legislation and policy that impacts people with Down syndrome, follow the Texas Down Syndrome Advocacy Coalition on Facebook.

    About Down Syndrome Texas
    Down Syndrome Texas is a collaboration of Texas Down Syndrome Associations and other organizations who serve Texans with Down Syndrome and their families. The collaboration includes: Down Syndrome Association of Brazos Valley, Down Syndrome Association of Central Texas, Down Syndrome Association of Houston, Down Syndrome Association of South Texas, Down Syndrome Guild of Dallas, Down Syndrome Partnership of North Texas, East Texas Down Syndrome Group, Galveston-Houston Families Exploring Down Syndrome, Gigi's Playhouse El Paso, Gigi's Playhouse Sugarland, Red River Valley Down Syndrome Society, Rio Grande Valley Down Syndrome Association, and the Upside Down Club of Abilene.

    Deborah Tomai
    Down Syndrome Texas/Rio Grande Valley Down Syndrome Association

    Direct: 808-753-1598

  • Wed, October 24, 2018 9:02 AM | Anonymous member
    Down Syndrome Awareness

    Your families will find and connect to your DSA faster and easier than ever. Down Syndrome Affiliates in Action announced today a massive, nationwide effort to connect people seeking legitimate, in-person support dedicated to serving individuals with Down syndrome.

    But wait, there's more!

    DSAIA is working to change how DSAs work together and share information among each other and the individuals they serve. When your DSA participates in the program, you also join a statewide collaboration of Down syndrome support groups who work together to distribute consistent, up-to-date information about Down syndrome, avoid misinformation, dispel myths, and elevate peer-reviewed, evidence-based research conducted by field experts. 

    "Our job as professionals and leaders of Down syndrome organizations is to provide the individuals and families we serve with fact-based information and support to meet their individualized and promote inclusion in the community," said Deanna Tharpe, director of DSAIA. "We know that the best way to do that is through collaboration and partnership. This already occurs nationally through DSAIA, and working together on the state and local levels will only further our sustainability."

    Participating DSAs will be listed by state in a network of 50 distinct and individualized public websites. All DSA member organizations are already included. You can apply for the program, and add your organization to this network of vetted in-person sources of Down syndrome support, so individuals impacted by Down syndrome in your community can find and connect to you.

    Publicly, the websites will primarily serve families seeking in-person support and information after a Down syndrome diagnosis or families looking for programs and services that support their child with Down syndrome  More so, the sites serve everyone - including medical providers, therapists, scientists and researchers, educators, journalists, and policymakers- who need legitimate, in-person sources of information about Down syndrome.

    You can find lists of local, in-person support at To view specific state networks, type in www.downsyndrome and the state name with no spaces .org. For example, in Texas, the list of DSAs can be found at

    DSAIA modeled the program off the Ohio Down Syndrome Collaboration (www.downsyndromeohio), a network of seven Ohio DSAs that work together to serve and advocate for individuals impacted by Down syndrome. Recently, the collaboration worked together with the greater disability community to pass Ohio House Bill 332, a piece of legislation that prohibits discrimination for people with disabilities as it pertains to Organ Transplants and Organ Transplant Waitlists. This work directly impacts the lives and futures of people with Down syndrome and other disabilities and as of September 28, 2018, this law has taken effect in Ohio.

    "No matter the wording of each of our missions, we all have a shared goal of best serving individuals, families, and communities impacted by Down syndrome," explains Kari Jones, executive director of the Down Syndrome Association of Central Ohio and DSAIA board member. "If we can't work together towards that greater purpose, what are we really trying to do? You get much more than you could ever give. We hear this so echoed so often about people with Down syndrome, but I believe the same holds true for collaboration."

  • Mon, October 15, 2018 9:21 AM | Anonymous member

    In a landmark initiative to embolden nonprofit organizations with leadership training and organizational capacity building, the national association for leaders of Down syndrome organizations, Down Syndrome Affiliates in Action (DSAIA), has already awarded grants in excess of $11,000 to seven organizations whose missions focus on supporting individuals with Down syndrome.

    "DSAIA is committed to building organizational and leadership capacity for Down syndrome support groups, and this funding will help these organizations make a greater impact improving the lives of individuals with Down syndrome and their families in the areas they serve," said DSAIA Executive Director Deanna Tharpe.

    Those organizations include: Centre Region Down Syndrome Society, Down Syndrome Association of Greater Toledo, Down Syndrome Association of the Valley, Down Syndrome Network of West Virginia, F.R.I.E.N.D.S. of Frederick County, Lancaster Down Syndrome Advocates, and Miami Valley Down Syndrome Association.

    The awarded organizations receive a registration to DSAIA's national leadership conference in St. Louis (Feb. 28 - Mar. 3, 2019) as well as access all DSAIA trainings,tools and resources, including an online library of more than 1,000 templates, documents, samples and how-to’s; monthly professional development webinars and archive of past webinars; discounts on popular products and services; mentoring; accreditation check lists; and more. Additionally, awarded organizations join the DSAIA membership network, which consists of more than 85 other Down syndrome affiliates. 

    Initial funding for the grant program came from FirstEnergy Corp., one of the nation's largest investor-owned electric systems, serving more than 6 million customers in the Midwest and mid-Atlantic regions. In turn, DSAIA developed the grant program for organizations that support individuals, families, and communities impacted by Down syndrome and are located within the FirstEnergy service areas of Ohio, Pennsylvania, West Virginia, Maryland, and New Jersey. 

    Down Syndrome Affiliates in Action is a nonprofit trade association serving Down syndrome associations. DSAIA represents more than 1,000 leaders in the Down syndrome community from over 80 organizations. Our members range from brand new start-ups to 40-year veteran organizations in the U.S. and abroad. DSAIA's mission is to increase member organization’s organizational capacity through collaboration, resource sharing, and networking.

  • Wed, April 11, 2018 10:46 AM | Anonymous member

    Grant Writing for Dummies author Beverly Browning writes: 

    "Building your grant seeking and grant writing skills is the best way to secure funding for your organization. The keys to finding grant funding opportunities and writing award-winning grant proposals are knowing where to find opportunities and understanding what funders want to read." 

    DSAIA can help!

    Grantwriting Online Course: Beverly Browning presents a 8-part grantwriting course just for Down syndrome organizations. DSAIA has coupled Dr. Browning's essential "Grantwriting Bootcamp" for first-timers with her more advanced "Grantwriting for Organizational Survival" into one all-encompassing online course that will boost your grantwriting power. All leaders of DSAIA member organizations can take this course completely free.

    eCivis: Lauded as one of the best grants programs, eCivis will help your organization find, analyze and apply for grants. DSAIA member organizations have free access to this powerful tool. New users can contact us for your login.

    Resource Library: Find grantwriting templates, samples, how-tos and presentation decks in STACKS, the online repository and resource library, accessible exclusively to DSAIA member leaders.

  • Tue, November 14, 2017 6:49 PM | Anonymous member

    How do you make an already premier leadership event for Down syndrome leaders even more exciting and popular? We picked the top 7 reasons why this year's DSAIA Leadership Conference will be the most influential, most fun event for DS organizations and leaders that you probably don't know about.

    1. We're kicking things off Friday morning with an inspirational and thoughtful keynote by renowned speaker and special education advocate, Chris Ulmer.

    2. DSAIA has partnered with Global Down Syndrome Foundation, which will host a pre-conference symposium of latest trends and developments in Down syndrome research and medicine at the renowned Linda Crnic Institute for Down Syndrome. 

    3. Not only does Denver offer 300 days of sunshine, a thriving cultural scene, diverse neighborhoods, and boundless natural beauty, it's so much more fun in the wintertime!

    4. Donor-driven leaders will satisfy their hunger for all-things development with a full-day of intensive fundraising intervention. Sandy Rees, the brilliant fundraising brain of GetFullyFunded will present this exciting, new all-day workshop.

    5. As partner and lead sponsor of the DSAIA Leadership Conference, Global Down Syndrome Foundation has promised a host of surprises and special opportunities just for DSAIA member leaders. We promise not to prolong the suspense too much.

    6. You already know about the early-bird registration deal. What you may not know is that you can turn that early-bird savings into even more cool stuff! Room upgrades, VIP seating, exclusive opportunities and gift cards are all up for grabs when you register before Dec. 1.

    7. We're celebrating the mile-high ski culture at the Thursday night opening reception, which will sufficiently immerse you in the ski-lodge spirit of Colorado's Rocky Mountains. 

  • Tue, November 14, 2017 11:00 AM | Anonymous member

    Giving Tuesday is Nov. 28 - less than two weeks away. This day has garnered a lot of national attention over the years, and many nonprofits and charities across the country plan their campaigns for months and are now gearing up for their hallmark end-of-year giving campaign. 

    If you've already been planning for Giving Tuesday, you've probably implemented these steps. But if you're like many local organizations that may be just starting to think about Giving Tuesday and end-of-year fundraising, these tips may be just what you need to inspire your success.

    1. Set a Goal. If you've got a goal, you're more likely to reach for it. Don't be overly ambitious if this is your first Giving Tuesday or you're coming late to the party. Do look at your budget and annual giving plan - is there a number that would get you closer to your annual goal?

    2. Don't reinvent the wheel. Use the Giving Tuesday resources already avaiable online. Visit, which is chock-full of resources, results from previous years, case studies, and more. Their toolkit has ideas, logos and branding materials, videos, and more. They also regularly update their blog with examples from other organizations that participated in #GivingTuesday, general announcements, and best practices.

    3. Start promoting today and ride the momentum. Whether you start planning for Giving Tuesday in March or November, you need to let your community know as soon as possible, especially if you've only got two weeks to generate some buzz. Pre-write your next 14 days of communication, including social media posts, blog articles, emails, mission-moment stories, and phone call scripts. Ask your families to join the campaign and share your information with their friends and family. Be creative - this is a great time to try out new and different fundraising strategies and platforms. 

    4. Make it Personal. Especially at this late stage, you need to get personal with your greatest mission enthusiasts. This is a time to check in with your donors, wish them an early "Happy Holidays," and show them how their existing support is serving your mission - be specific. Send a personal email or hand-written note; a phone call is even better for showing top tier donors their value. Your message should include a nugget about participating in Giving Tuesday and how Giving Tuesday donations will support the individuals with Down syndrome in your community. 

    When it comes to the holiday season, kick off this end-of-year giving push with a knock-out Giving Tuesday and you'll be making your New Year's toasts to fundraising success.

  • Tue, November 14, 2017 9:03 AM | Anonymous member

    Make the most of your budget process with DSAIA tools, tips and resources

    DSAIA has compiled the resources you need to make your 2018 budgeting effective and as painless as possible. 

    "Free for Everyone" Articles

    Premium Members Only Content

    Find a featured list of budgeting tools, articles and videos in S.T.A.C.K.S, including these and other useful resources.

    • Year-end checklist (video and documents)
    • Sample nonprofit budget (template)
    • Budgeting: A Guide for Nonprofits (article)
    • Balance Sheet Cheat Sheet (link)
    • Nonprofit Budgets Have a Balance. False! (article)

    Access this premium content and more when you become a DSAIA member.

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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


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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