Welcome to the Down Syndrome Consortium. Building relationships, sharing information, advancing science.
|Video fades in to reveal Dr. Yvonne Maddox sitting in an armchair in front of a fireplace.
BANNER TEXT: Yvonne Maddox, Ph.D. Chair, NIH Down Syndrome Consortium. Eunice Kennedy Shriver National Institute of Child Health and Human Development.
|Dr. Yvonne Maddox: Hello, I'm Dr. Yvonne Maddox and I'm Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, or NIH as we call ourselves. I also chair the NIH Down Syndrome Consortium. |
|Video cuts to wider shot of Dr. Maddox facing a family of three—a young boy, his father, and his mother—sitting together on a sofa.
BANNER TEXT: The Zanfordinos. Stormie, Tony and Dian.
|Dr. Maddox: And I'm here today with Stormie Zanfordino and his parents…|
Tony Zanfordino: Tony.
Dr. Maddox: …Tony…
Dian Zanfordino: And Dian.
Dr. Maddox: …and Dian. And they are here with me as I talk with them about the NIH Down Syndrome Consortium, the new Down syndrome website, and the new Down syndrome registry.
And I wanted to just say first to the group that we are so pleased to have you here and also to say that the NIH Director was responsible for actually creating the Down Syndrome Consortium.
|The video fades to an animated diagram showing a box labeled "NIH." A new box appears to the right of the NIH box, labeled "Down Syndrome Working Group" and connected by a line to the date 2006. A third box appears to the right of the second box; it is labeled "The Down Syndrome Consortium," and is connected to the date 2011.
||Dr. Maddox: Because it was in 2006 that he charged a working group to look at the various institutes that are involved in Down syndrome research, and to find a way for us to bring our research activities together under a partnership.|
|The "Down Syndrome Consortium" box moves to the left of the screen, and a collage of diverse people with Down syndrome appears next to it.
The box is replaced by a new box labeled "DS-Connect™: The Down Syndrome Registry."
|Dr. Maddox: And what the consortium has done is to establish a Down syndrome registry that we call "DS-Connect."|
|A series of photographs featuring people with Down syndrome using computers with their families appears above the caption "A national registry for people with Down syndrome."
||Dr. Maddox: This is a registry that allows individuals with Down syndrome and their family members on their behalf to provide their contact information, any medical history that they have that's related to the survey and questionnaire that we provide them with.|
|The diagram fades back to video of Dr. Maddox speaking.
While Dr. Maddox is speaking, the video cuts to Tony Zanfordino holding and looking affectionately at his son.
||Dr. Maddox: And we're hopeful that this information will allow researchers and clinicians out there to get a better sense of what some of the needs really are and for us to recruit individuals into clinical trials so that we can develop more treatment and more technology to be able to care for individuals with Down syndrome.|
|Dian Zanfordino speaks to Dr. Maddox.
||Dian Zanfordino: How can we help you get this done?|
|Dr. Maddox responds while the Zanfordinos nod and listen.
BANNER TEXT: downsyndrome.nih.gov
|Dr. Maddox: Well, let them know that the consortium is out there. What the consortium is doing is helping to design a research agenda for Down syndrome. Also let them know that the website is there because the website has updated information on what's going on not only at NIH in Down syndrome research, but what's going on around the country. And then you need to let them know that the registry exists because we really want people to sign up for this registry.|
|Dian Zanfordino speaks to Dr. Maddox.
||Dian Zanfordino: We'll definitely do what we can to help, and you can count on us helping out. |
|Dr. Maddox speaks and Tony and Dian Zanfordino are shown paying attention.
||Dr. Maddox: And thank you so much for coming here and working with us today but also being part of our team now, because I see you as ambassadors who will really be part of the team helping us get out these important communication messages.|
|Stormie Zanfordino, sitting on his father's lap, addresses Dr. Maddox.
||Stormie Zanfordino: Bye Mrs. Maddox.|
Dr. Maddox: Goodbye Stormie, and again, thank you so much for being here today.
Stormie Zanfordino: Okay.
Dr. Maddox: And being here with your family. We really appreciate it.
|A graphic appears with text above the logos of the U.S. Department of Health and Human Services and the National Institutes of health.
GRAPHIC TEXT: Get DS-Connected! Join DS-Connect™: The Down Syndrome Registry today at DSConnect.nih.gov.
The Down Syndrome Consortium. Downsyndrome.nih.gov
The Down Syndrome Consortium Members:
- National Institutes of Health
- American Academy of Pediatrics
- American Association on Intellectual and Developmental Disabilities
- Association of University Centers on Disabilities
- Down Syndrome Affiliates in Action
- Down Syndrome Medical Interest Group
- Down Syndrome Research and Treatment Foundation
- Global Down Syndrome Foundation
- International Mosaic Down Syndrome Association
- Jérome Lejeune Foundation
- National Down Syndrome Congress
- National Down Syndrome Society
- Research Down Syndrome
- Special Olympics International
|GRAPHIC TEXT: Special Thanks to the Zanfordino Family
|Screen fades to black.