Chicago, Saturday June 10th 2017 Sponsored by the National Down Syndrome Society (NDSS) Session coordination: Committee for Science & Society; Session chair: Peter De Deyn
After a very successful and lively kick-off symposium in Paris (June 2015), the Comittee for Science & Society again organized the Science & Society Symposium at the second T21RS International Conference in Chicago, USA. On Saturday 10th of June 2017, this special session took place with the theme: ‘Down syndrome organizations as research partners’. Each attending association briefly introduced themselves, focusing on how they (could) contribute to research. Besides getting acquainted with each other, the Symposium was aimed at sharing thoughts and ideas, and discussing about research and future directions. Diana Bianchi (USA), director of NICHD, chaired a sub-session on ‘the pros and cons of having a relative with Down syndrome participate in clinical research’, followed by a sub-session on ‘medical policies for people with Down syndrome’ and the Association Introduction Round.
The Committee looks back at an inspiring and interactive Science & Society Symposium, and would like to thank all participating associations, family members and attendees for their input and the lively discussion.
T21RS Committee for Science & Society
Peter Paul De Deyn (Belgium, chairman), Alain Dekker (NL), Juan Fortea (SP), Sebastian Videla (SP), Lotta Granholm (US, SW), Cindy Lemere (USA), and Diana Bianchi (USA)
T21RS Science & Society Symposium Bulletin
Click here for the T21RS S&S Symposium Bulletin with background information about all participating Down syndrome associations presenting in the Association Introduction Round, as well as key links to research initiatives from each association.
Feinberg Pavilion, Northwestern Memorial Hospital at 251 E. Huron Street, Chicago, Illinois 60611, USA
17:00 – Welcome Peter De Deyn (chairman T21RS Committee for Science & Society)
Introduction to T21RS Committee for Science & Society Peter De Deyn
Current aims, collaborations and achievements, future directions
17:15 – The pros and cons of having my relative with Down syndrome participate in clinical research Sub-session chair: Diana Bianchi
Discussion with families about participating in scientific research
17:45 – Medical policies for people with Down syndrome Sub-session chairs: Juan Fortea and Cindy Lemere
Four initiatives to integrate care and research with social aspects for patients/clients and family members
Sebastian Videla (Catalan DS Foundation)
Melissa Parisi (NIH/NICHD)
Michelle Whitten (Global Down Syndrome): Medical care for adults with Down syndrome – lifting barriers
Kandi Pickard (NDSS): ABLE Act – Progress Report
18:40 – Break
18:55 – Association Introduction Round: DS associations as research partners
Each organization attending the T21RS Science & Society Symposium introduced themselves with a maximum of 3 powerpoint slides, and a maximum of 3 minutes in total, focusing on how they (could) contribute to research (main initiatives, research focus etc.).
National Down Syndrome Society (USA), Kandi Pickard