Research
We support and value the research that is being done nationally to help improve the lives of individuals with Down syndrome. By researching the organizations below, you can find ways for you and your child to participate.
The National Institutes of Health-supported Down Syndrome Registry, DS-Connect™, will allow people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe, confidential, online database.
The Down Syndrome Clinical Trials Network (DS-CTN) was founded by LuMind IDSC in 2018 to provide a system of associated medical clinics aligned to conduct large-scale, multi-site clinical trials and studies that accelerate understanding of health conditions associated with Down syndrome. The goal of the DS-CTN is to carry out clinical trials with the Down syndrome population by engaging clinical teams that treat people with Down syndrome.
The LuMind IDSC Foundation accelerates Down syndrome research to increase availability of therapeutic, diagnostic, and medical care options and we empower families through education, connections, and support. The Foundation maintains a clinic trial finder and research hub.
Another significant resource in the advocacy and funding of Down syndrome research is the Global Down Syndrome Foundation.
Advocacy
Advocacy for federal, state, and local policies that positively impact people with Down syndrome across the country is crucial for the equal rights and opportunities for individuals with Down syndrome. One of the most effective ways to get involved is to get connected with advocacy organizations, follow the advocacy alerts and act when it is time to contact your federal or state legislator or provide public comment on your story. Below is a list of a few of the organizations advocating for individuals with Down syndrome. We stay connected with these organizations and support their efforts by keeping our members informed and engaging members in advocacy. If you would like more information on how to get involved with our advocacy efforts, contact kowens@virginiadsa.org.
The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal. GDS_Full color Primary Logo Horizontal
Founded in 1979, the National Down Syndrome Society (NDSS) supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy, and Community Engagement. NDSS advocates focus on education, employment, civil rights, caregiving, and health. NDSS Logo
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Founded in 1973, NDSC is the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of diagnosis, whether prenatal or at birth, through adulthood. The NDSC legislative priorities are strongly rooted in education advocacy as well as employment, Medicaid, and healthcare. National Down syndrome congress logo
In Virginia, the Arc of Virginia leads the advocacy efforts for people with intellectual and developmental disabilities. Together with many partner organizations like VDSA the Arc of Virginia understand the issues and provide the tools for advocacy and opportunities to make change for individuals with disabilities in Virginia. Arc of Virginia Logo
Voices for Virginia’s Children (https://vakids.org/) leads the advocacy efforts for all of Virginia’s children. Together with many partner organizations, Voices works as the Commonwealth’s only independent, multi-issue child policy and advocacy organization. They use the KIDS Count data (which they are the home for in Virginia) and independent policy research to determine unmet needs and threats to child well-bring, recommend sound policy solutions, provide objective input to policymakers, and educate and mobilize leaders and concerned citizens to support policy initiatives.
