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T21RS Science & Society Symposium 2017

Chicago, Saturday June 10th 2017

Sponsored by the National Down Syndrome Society (NDSS)
S
ession 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.

 

Program

Click here for the PDF of the T21RS Science & Society Symposium (Introduction to T21RS Committee for Science & Society and the Assocation Introduction Round).

Location
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.). 

  1. National Down Syndrome Society (USA), Kandi Pickard

  2. Global Down Syndrome (USA), Michelle Whitten

  3. Fondation Jérôme Lejeune (France), Catherine Lemmonier

  4. LumindRDS (USA), Hampus Hillerstrom

  5. The Matthew Foundation (USA), John Blascovich

  6. Trisomie 21 France (France), Renaud Touraine

  7. Down’s Syndrome Association (UK), Gillian Bird

  8. Band of Angels (USA)

  9. Alana (Brazil), Claudia Moreira

  10. Catalan Down Syndrome Foundation (Spain), Bessy Benejam

  11. Down Syndrome International (UK), Helen Powell

  12. Association Française pour la Recherche sur la Trisomie 21 (France), Jean-Marc Richard

  13. Down Syndrome Hungary, Agnes Toth

  14. AMIPI-Bernard Vendre (France), Jean-Marc Richard & Marie-Laure Blandin

  15. Down Syndrome OPTIONs (USA), Alexandria Durkin

20:05 Summary Peter De Deyn

20:10 End