The National Down Syndrome Society is committed to creating a world where individuals with Down syndrome thrive.
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Strategic Direction
We know that the world is changing rapidly, and the expectations of the Down syndrome community are evolving with it. Individuals with Down syndrome are living longer, research participation is expanding, the political landscape continues to shift, and technology is advancing at an unprecedented pace. These are all driving the need for NDSS to grow and adapt alongside the community we serve.
The opportunity to define the future is now. In October 2025, NDSS merged with LuMind IDSC, a defining moment that allowed us to sharpen our focus in community support and advocacy while positioning NDSS to play a significant role in research and supporting clinical trial participation. Building upon this momentum, NDSS is approaching its 50th anniversary, a milestone to not only celebrate our successes of the past, but also a strategic opportunity to define our successes of the future. Both of these together create the perfect moment for us to define how we navigate our future.
We are proud to share the NDSS 2026-2029 Strategic Plan: a roadmap focused on strengthening our reach within the Down syndrome community, building upon our impact, and aligning our work to focus where it matters most: supporting more individuals across communities, expanding access, delivering greater value, and achieving meaningful, measurable impact so all individuals with Down syndrome and their families feel supported throughout their life.
Shaped by input from the community, staff, and our Board, NDSS is strategically reorganizing its work around three core pillars: Community Access and Supports, Research, and Advocacy and Policy. Our vision for the future is focused on expanding our reach and connecting with more individuals and families across underserved and underrepresented communities to deliver greater impact and strengthen our role as a leader shaping the future for individuals with Down syndrome across the lifespan.
As we look ahead over the next three years, we are committed to continuing to shape the future of the Down syndrome landscape. We want to be the trusted authority for information, ensuring individuals, families, and partners have access to what they need to make informed decisions and take action.
Thank you for your enduring commitment in helping to share the future. Together we can help create a world where all individuals with Down syndrome thrive.
How We Got Here
Ensuring that all individuals with Down syndrome are valued, included, and have the opportunity to realize their full potential is more important than ever. As the landscape continues to evolve, our community continues to evolve too. We've heard about gaps that families are facing today, and we are ready to meet this moment and sharpen our focus to deliver the greatest impact we can in support of our families. Our merger with LuMind IDSC helped launch our vision to the future, and from there we continue to evaluate what is possible so all individuals with Down syndrome can thrive.
Strategic Plan
Our vision is a future in which all individuals with Down syndrome are valued, included, and have the support they need to thrive throughout the lifespan.
Over the next three years we are committed to:
- Unifying and elevating the NDSS program offerings
- Evolving Advocacy and Public Policy to expand national influence and impact local and state advocacy.
- Defining and launching our Research pillar to facilitate research projects that continue advancing health outcomes for individuals with Down syndrome.
- Investing in initiatives that directly expand awareness and extend national reach to ensure long-term financial stability.
- Build a high-performing organizational infrastructure to support growth and expansion.
Setting the Foundation
Phase 1 of our strategic plan includes evaluating our work at NDSS and strengthening our team to ensure that we have the foundation established to best support our community in the areas they need the most. As we look to build upon our foundation, we will also be evaluating the needs of the community to evolve and grow in the areas where current gaps exist or challenges are present. Priorities within this phase include:
- Elevating knowledge and support for Down syndrome-associated Alzheimer's Disease (DS-AD)
- Continuing to promote CARE Down Syndrome to educate medical healthcare professionals about caring for adults with Down syndrome.
- Promoting and partnering with researchers on results from the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) study.
NDSS 2026-2029 Strategic Goals
Community Access & Supports
Expanding access, opportunity, and independence across the lifespan for all individuals with Down syndrome.
Grow community program participation
Increase resource utilization
Expand our reach with community services
Ensure community satisfaction along the way
Advocacy & Public Policy
Expand national influence and drive meaningful policy change to ensure individuals with Down syndrome have access and supports needed to thrive in all stages of life.
Maximize legislative impact
Increase advocacy participation
Advance affiliate engagement
Create public program information hub and expand community knowledge
Research
Drive and facilitate research projects that increase awareness, expand clinical trial participation, and strategically fund high-impact initiatives to continue advancing health outcomes for individuals with Down syndrome.
Continue building research partnerships
Diversify and maximize grantmaking opportunities
Successfully complete our Research Priority Project Milestones
Increase community research engagement
Awareness & Sustainability
Expand awareness, extend national reach, and ensure long-term financial sustainability to support the Down syndrome community in all areas of need.
Growth in revenue
Retainment of donors
Expand our audience reach
Increase our partnership development
Organizational Excellence
Build the infrastructure to support growth, innovation, and impact.
Optimize operational efficiency
Set strategic performance measures
Optimize processes to increase outputs for community support
Celebrating the Past & Launching the Future
Phase 3 of our strategic plan honors the milestones we have achieved together over the past 50 years while also celebrating our plans for the future. On June 20, 2029, NDSS celebrates our 50th anniversary. As we look back at honoring how far we have come, we also have the opportunity to drive what comes next for our future. Priorities within this phase include:
- Honoring the past 50 years of our work at NDSS
- Implementing our work from the strategic plan
- Setting the stage for our next strategic plan