The National Down Syndrome Society and LuMind IDSC are joining forces to advance the rights, health, and well-being of individuals with Down syndrome. By uniting the deep advocacy roots, community leadership, resources, and policy influence of NDSS with LuMind IDSC’s expertise in research and health equity, this combined organization will harness complementary strengths to create even greater impact. Together, we are creating a world where individuals with Down syndrome thrive.
This unified organization will drive progress across multiple fronts, from accelerating scientific research, improving access to quality healthcare, shaping inclusive public policy, and shifting public perception through increased awareness and education. NDSS will be adding a research pillar to its core programmatic work.
Our newly expanded team provides the greatest chance of successfully accelerating treatments for our community’s greatest current health challenge: Alzheimer’s disease. We are putting our families first in this journey of transformative change. Read on to view our FAQ at the bottom of the page.
FAQs
What does this mean for you?
- We’re maximizing our impact for the Down syndrome community by combining strengths and ensuring families can access the most current and accurate information, programs, and resources as efficiently as possible.
- This merger will expand the reach of LuMind’s research efforts and create less confusion by consolidating into one NDSS brand.
- The new NDSS: you are a part of this legacy that is going to have a massive impact on the lives of individuals with Down syndrome and their future.
- LuMind IDSC has worked with nearly 40 pharmaceutical companies, established the Down Syndrome Clinical Trials Network with 14 sites in 10 states, and pioneered the first longitudinal study of adults aged 25+ with Down syndrome. Together, we will leverage this expertise to create tools, greater access, and opportunities for families to participate and learn more about the latest research and clinical trials.
How is this different from other national organizations?
- Since its inception 46 years ago, NDSS has provided comprehensive resources for the Down syndrome community. Our multitude of website pages and resources, like long-form publications and one-pagers throughout the lifespan, support individuals with Down syndrome, their parents and caregivers, as well as professionals. Infusing resources from the LuMind IDSC digital resource library will help bolster the information provided to families.
- This newly formed organization is taking the strengths from LuMind as a leader in accelerating research and health equity to create one organization driving change in policy, research, employment, education, and health.
- NDSS is the only national organization that offers resources, advocacy, and support throughout the lifespan—without requiring membership.
Why are we coming together?
- We are looking ahead to ensure we meet the needs of our growing community. From the very beginning, we have been dedicated to empowering individuals with Down syndrome and their families. Research has always been part of the NDSS foundation, and today we are reaffirming that commitment by making it a top priority once again. With LuMind joining NDSS, we are uniting our strengths to expand research, innovation, and advocacy.
- To concentrate our efforts on accelerating progress in policy, research, health, and public awareness, our complementary and combined programs will continue to empower individuals with Down syndrome and their families with a wide range of programs, opportunities for connection, and resources throughout the lifespan.
- In uniting our voices, the new NDSS will focus on addressing the most pressing challenges facing our community, like Alzheimer's disease, and we want to hear from you so that we can make the greatest impact.
What will stay the same?
- Everything you trust NDSS to provide – our programs, our advocacy, our community—remains the same. Moving forward, we will be united as one brand: NDSS.
- Everything that NDSS and LuMind currently offer will stay the same, and we will continue to do what we have been doing to serve our community.
What is changing?
- The LuMind team will join the NDSS team as one organization. LuMind Family Weekend and LuMind Research initiatives will merge with NDSS’ and Research will be elevated as a core pillar and program of NDSS.
- With LuMind's research expertise and connections and NDSS' vision and community reach, we're bridging the gap between Down syndrome research and the Down syndrome community. Together, we are creating more powerful and unified support for individuals with Down syndrome and their families.
What is next?
In addition to providing the programs, resources, events, and supports that our community relies on, we will focus on transforming the future for people with Down syndrome through systemic change. We will start with the connection between Down syndrome and Alzheimer’s disease.
LuMind has been a leader in accelerating Alzheimer’s disease research, connecting families to research opportunities and driving change in research policy to be more inclusive. For over a decade, NDSS has supported families with Alzheimer’s disease resources and while also championing policies and regulations to ensure our community is included in research. By working together, we can be the driver of change at all levels to ensure one of our top priorities is met: ensuring individuals with Down syndrome are included in the search for an Alzheimer's disease cure.
You can be part of this effort too! We want to hear from you to help shape the future. We will be looking for feedback from you soon! If you have any questions, please email communications@ndss.org.
Donation FAQs
- If you are an NDSS donor, the ways you can support NDSS stay the same. You can learn more on our NDSS Donations page.
- If you are a LuMind IDSC donor, check out our FAQs for LuMind donors or the NDSS Donations page.
Thank you for your support of the Down syndrome community!