Harlan Still & Koch

Down syndrome registry aims for support and understanding

A few weeks ago we wrote about the story of a young girl with Down syndrome who pursued her dream of becoming a model through Facebook. After creating her own Facebook page to convince clothing company Wet Seal to hire her as a model, the girl was flown to California for a photo shoot. By achieving her goal of becoming a model, this teenager not only inspired others, but likely also helped raise awareness of the disability she lives with. 

Down syndrome is a chromosomal disorder that some people in Missouri live with. While medical professionals and those who live with the condition understand some aspects of Down syndrome, there is much still to be learned. For this reason, a national Down syndrome registry called DS-Connect was envisioned and recently launched. 

With the goal of providing an easy way for researchers and people with Down syndrome to connect, DS-Connect was created. The online database allows individuals who live with Down syndrome to register, learn about the experiences of other people who have Down syndrome, and sign up to participate in studies that will help researchers continue to better understand the condition. The database is confidential, so participants can feel free to share their experiences and learn from others.

Down syndrome is not always the debilitating condition that some people believe it to be, and the young girl from St. Louis proved that. However, living with Down syndrome does present some unique challenges. Hopefully DS-Connect will facilitate a greater understanding of this condition as well as a community for those who live with it.

Source: Disability Scoop, "National Down Syndrome Registry Goes Live," Shaun Heasley, Sept. 9, 2013

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