The Down Syndrome Diagnosis Network (DSDN) is the largest national organization supporting new and expectant parents of children diagnosed with Down syndrome. The mission of the Down Syndrome Diagnosis Network is, “to connect, support, and provide accurate information to parents - and the medical professionals who serve them - from the time of diagnosis through age 3 while fostering the opportunity for lifelong connections.”
Each year, DSDN hosts the DSDN Rockin' Moms Retreat for mothers of children with Down syndrome. Retreat attendees from across the country spend the weekend learning and connecting with others in the DSDN community.
Two of our INCLUDE DCC leaders, Joaquin Espinosa, PhD, and Melissa Parisi, MD, PhD, presented at a roundtable organized by the Global Down Syndrome Foundation (GLOBAL) about how the NIH INCLUDE Project and the INCLUDE DCC are advancing Down syndrome research. Other speakers included Bryn Gelaro and Michelle Sie Whitten from GLOBAL, Dr, Nicole Baumer from Boston Children’s Hospital and Dr. Lina Patel from the Linda Crnic Institute for Down Syndrome.
Dr. Espinosa’s presentation was titled: Research Discoveries to Elongate Lifespan and Improve Health Outcomes in Down Syndromeand focused on the latest scientific discoveries helping improve the health of people with Down syndrome. Dr. Parisi’s presentation was titled: NIH Down Syndrome Research Funding – INCLUDE Update & Community Participationand outlined how NIH is continuing to support Down syndrome research and explained the many ways people with Down syndrome and their families can participate.
The INCLUDE DCC is incredibly grateful for this opportunity from GLOBAL and DSDN, and we look forward to sharing more of our accomplishments with their community in the future.