Our Newsletter

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  • Wed, October 24, 2018 10:02 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 10:21 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 11:46 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 7:49 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 12:00 PM | 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 10:03 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.

  • Mon, September 11, 2017 7:28 AM | Anonymous member

    One of the most important "jobs" that a Down syndrome association has is providing information and training to educators. A useful tool is a newsletter created just for teachers, complete with the latest information/research and resources/tools that will help in teaching students with Down syndrome. However, at DSAIA we know that your resources are already spread thin and this type of communication can be time-consuming to create. DSAIA members are always up to the challenge, though, and eager to collaborate to bring a much-needed resource to other members.

    Several DSAIA members who focus on education came together a few months ago to create our Education Newsletter especially for use in communicating with teachers and other staff. Led by Kim Owens of Down Syndrome Association of Greater Richmond, the work group collected resources and designed a product that allows for other DSAIA members to drop in their logo and upcoming events. "We hope this newsletter will help you in reaching out to the education professionals to show them that your DSA is ready to support educators with information and questions they may have about educating their student with Down syndrome," said Owens.

    Look for more information on this resource in your inbox next week!  

  • Mon, September 11, 2017 7:19 AM | Anonymous member

    How many babies with Down syndrome are born in the U.S. annually? According to Dr. Brian Skotko, Board-certified medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, new research suggests that conventional wisdom of Down syndrome prevalence numbers has indeed changed. Skotko explains more in the latest DSAIA Live! podcast.

    The new data shows in 2011, there were 1 in 800 live births of babies with Down syndrome, which is about 5,000 babies with Down syndrome born annually. The research also calculated the reduction rate for that year at 32%, which means that an estimated 3,300 were not born due to elective terminations. A fact sheet containing all of the newly compiled data is available for download online.

    Dr. Skotko explains in the podcast that because these new numbers area a change from previous prevalence data, DSAs around the country should update their fact sheets and awareness materials. "We all need to be using the same numbers," says Dr. Skotko.

    To listen to the full interview with Dr. Skotko, go to the DSAIA Live! podcast page.

  • Thu, August 10, 2017 12:06 PM | Anonymous member

    From visionary ideas to practical management tips, Down syndrome organization leaders know that no other conference comes close to providing the useful tools and knowledge that the annual DSAIA Leadership Conference offers. As a speaker at the annual event, you can be an integral part of bringing top-level training and networking opportunities to DSA leaders from across the nation.

    Attendees come from large and small organizations, veteran and start ups. That's why it is so important to offer a variety of topics and learning levels. It's also why we carefully vet our speakers/presentations to make sure that the program is the best it can be, improving each year and bringing something for each type of attendee. 

    Learn more about what topics our members value and the process itself by clicking here.  Submissions are being accepted until the program is complete but all speakers will be notified by October 1, 2017, regardless of the status of the program.

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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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Down Syndrome Affiliates in Action
1335 34th St NE
Paris, TX  75462



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