Your Families will Benefit from DSAIA'S New Nationwide Initiative Promoting your DSA's In-Person Support Services

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."

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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PO Box 7192

Missoula, Montana   59802



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