The inaugural national Research & Medical Care Roundtable was held July 18, 2013, attracting top scientists and researchers focused on Down syndrome. The experts presented their work and answered questions for over 400 attendees, approximately 80 percent being self-advocates and family members, and 20 percent professionals. The Global Roundtable, held in connection with the National Down Syndrome Congress Convention in Denver, was a full day of cutting-edge research and best-practices medical care organized into five parts: an NIH Keynote and four panels focused on Medical Care, Prenatal Testing, Basic Research, and Down Syndrome & Alzheimer’s Disease.
The Global Down Syndrome Foundation Research & Medical Care Roundtable returned in 2015, with a focus on “Alzheimer’s Disease and Down Syndrome – What Parents and Caregivers Should Know.” The Global Roundtable was held Thursday, June 25, 2015, at the JW Marriott Desert Ridge in Phoenix, Arizona, before the National Down Syndrome Congress Convention. Topics included a review of promising research, including clinical trials, when a child or adult with Down syndrome should get tested, standards of medical care, advocacy and support.
The Global Down Syndrome Educational Series was launched in 2006 and brings nationally and internationally renowned Down syndrome experts to Colorado for two full days of lectures. The first day is designed for professionals who impact the lives of individuals who have Down syndrome, and the second is for parents and caregivers. Topics focus on accurate and updated medical, educational, and therapeutic best practices.
Beginning in 2011, The Linda Crnic Institute Lectures feature leading researchers and clinicians in a series of academic presentations of aimed at educating medical students and professionals about the latest research and best practices surrounding Down syndrome. Lectures are held at University of Colorado School of Medicine Anschutz Medical Campus, which also houses the Crnic Institute. The Linda Crnic Institute Lecture Series is currently on hiatus, but will resume in Fall 2012.
Read more about the Linda Crnic Institute Lectures
Self-advocate day on Capitol Hill – July 19, 2012
The Global Down Syndrome Foundation is partnering with the National Down Syndrome Congress to host Self-Advocate Day on the Hill in Washington, D.C. on July 19, 2012. We anticipate this advocacy effort will be largest ever in our nation’s capital focused specifically on Down syndrome, as the Day on the Hill will coincide with the National Down Syndrome Congress Annual Convention held in D.C. July 19-22. Self-advocates will have the opportunity to influence public policy that affects people with Down syndrome and their families by meeting with members of Congress and attending committee hearings and meetings at the nation’s capital.
For more information, please visit the National Down Syndrome Congress.
Down syndrome occurs when a person has three copies of the 21st chromosome instead of the normal two copies. Studies show that one the main genes responsible for Alzheimer’s disease is on the 21st chromosome and is therefore more active in individuals with Down syndrome. A workshop was held Sept. 13-14 for scientists who are involved in Down syndrome and Alzheimer’s research.
Read more about this Scientific Workshop.
Down Syndrome: National Conference on Patient Registries, Research Databases and Biobanks
On December 2 and 3, 2010, the Global Down Syndrome Foundation and the Eunice Kennedy Shriver National Institute of Child Health and Human Development co-hosted and co-organized Down Syndrome: National Conference on Patient Registries, Research Databases and Biobanks in Rockville, MD.
Read more about this National Conference
World Down Syndrome Congress – August 15-17, 2012
National Down Syndrome Congress Annual Convention – July 20-22, 2012