Programme for Down syndrome associations and families

One of the missions of the T21RS is to work together with local Down syndrome associations to convey recent scientific findings to Down syndrome families. The activities during the biennial T21RS meeting organized for families and associations are a unique opportunity to promote face-to-face interaction with researchers. Visit this website to learn about the scheduled activities for Saturday June 8 2019.

 

              

 

Families Programme Registration

If you are interested on participating to this programme, please follow this link to the registration form:

Saturday, June 8, 2019

PROGRAMME FOR FAMILIES: ADVOCACY, AWARENESS & FUNDRAISING

Through a series of short presentations and Q&A, this session will address important issues for self-advocates, family members, and Down syndrome organizations regarding three areas that are intricately related – advocacy, awareness & fundraising for Down syndrome research.  To facilitate the interaction, English-Spanish and Spanish-English translations will be provided. This symposium is organized by the Science and Society Committee of the T21RS.

09:00  Welcome:Mara Dierssen (President, T21RS) and Jean Delabar (Chair of the Fundraising and Membership Committee)

09:15   The Importance of DS Research & How DS Organizations and Families Can Advocate for Government Funding: Michelle Sie Whitten (T21RS Chair of Morning Session, President & CEO of Global Down Syndrome Foundation, Parent)

09:50   Self-Advocates with  Down Syndrome Make it Happen!: Megan Bomgaars (Emmy-award winning Actor, Entrepreneur, Motivational Speaker, Self-Advocate)

10:15   Scientists with Family Members with Down Syndrome – Things to Consider Before Participating in Research: Keith Smith (Crnic Institute Human Trisome Project Program Manager, Brother) & Katherine Waugh (Crnic Institute Postdoctoral Fellow, Sister-in-law, Down Syndrome World magazine science contributor)

10:50    Engaging the Press, Self-Advocates & Celebrities to Raise Awareness & Funds: Michelle Sie Whitten (T21RS Chair of Morning Session, President & CEO of Global Down Syndrome Foundation, Parent) and TBD Guest speaker from Spain (head of a DS fundraising organization)

11:30    Final Q&A/Interactive Discussion  ​​

12:00- 15:30  SCIENCE AND SOCIETY SYMPOSIUM – PROGRAMME FOR FAMILIES

This years’ symposium primarily intends to have an interactive discussion between the speakers and the audience.  To facilitate the interaction, English-Spanish and Spanish-English translations will be provided. This symposium is organized by the Science and Society Committee of the T21RS.

T21RS Committee for Science & Society:  Peter Paul De Deyn (University Medical Center Groningen, The Netherlands) (Chairman), Alain Dekker (University Medical Center Groningen, The Netherlands), Juan Fortea (Fundació Catalana Síndrome de Down, Spain), Sebastian Videla (Fundació Catalana Síndrome de Down, Spain), Lotta Granholm (University of Denver, USA), Cindy Lemere (Brigham and Women’s Hospital, Harvard Medical School, USA)

12:00   Welcome: Peter De Deyn (Chairman of the T21RS Committee for Science & Society)

12:15   Parent-reported needs for  development of research on Down syndrome (10 minutes presentation + 20 minutes debate)
Hampus Hillerstrom (LumindRDS, USA).
Results from the parents’ surveys on knowledge and personal experiences towards Down syndrome studies. Conducted by LumindRDS in the USA and Fondation Lejeune in the European Union.

12:45   Clinical studies (10 minutes presentation + 20 minutes debate)
Juan Fortea (Sant Pau Hospital, Spain).
General overview of clinical studies and what we can expect for the future. Future clinical trials on Alzheimer’s disease will be discussed. The voices of families and associations are encouraged.

13.15    How Global is Supporting Science & Possibilities for Collaboration. Michelle Whitten (Global Down Syndrome, USA)

13:30   Lunch break and Meet the Scientist– More info here –> link
During lunchtime, individuals with Down syndrome, their families and caregivers will have the opportunity to discuss and ask questions to junior researchers about their work and other aspects of research. For young investigators, it will be and apportunity to get to know individuals with Down syndrome and their families.

14.00   Participation in research: pros and cons. How to involve families in research? (30 minutes debate)
Peter De Deyn (University Medical Center Groningen, The Netherlands)
Discussion with the audience about the needs and targets for research on Down syndrome. What is the point of view of family members and caregivers about participating in research?

14:30   Ethics: autonomy of people with Down syndrome (10 minutes presentation + 20 minutes debate)
Jesús Florez (University of Cantabria, Fundación Iberoamericana Down21, Spain)
How can we promote autonomy in people with Down syndrome? What should -and should not- expect from this autonomy?

15.00   Human Rights Assembly. Fundació Catalana Síndrome de Down, Spain

15:15   Summary and closure. Peter De Deyn (University Medical Center Groningen, The Netherlands)

 

15:00-18:00 BRIDGING KNOWLEDGE SESSION

Jesús Flórez (University of Cantabria, Fundación Iberoamericana Down21, Spain), Carmen Martínez-Cué (University of Cantabria, Spain)

Doctors and scientists may be brilliant in their fields, but some may not be great at communicating their knowledge to the lay people.  A good communication is important when research scientists are presenting their work aiming to reach non-scientific participants. With that goal, a team of experts directed by Profs. Jesús Flórez and Carmen Martínez-Cué will offer excerpts and summaries in Spanish of the relevant findings and discoveries reported during the conference. Profs. Flórez and Martínez-Cué will simplify the technical language so that the main findings can reach families and other professionals of the Down syndrome associations.