2013 News- Down Syndrome Cognition Research

& New Down Syndrome Patient Registry


NIH Announces New Down Syndrome Patient Registry

In September, 2013, the National Institutes of Health announced the launch of DS-Connect, a new national Down syndrome patient registry. One of the ongoing challenges of Down syndrome research has been identifying individuals with Down syndrome who are willing and able to take part in clinical trials; this patient registry addresses that challenge.  DS-Connect allow people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe, confidential, online database. Users will be able to create and edit their customizable online profiles, share their profiles with other DS-Connect users, and set reminders for medical care and other appointments and events. DS-Connect will also provide access to general information about Down syndrome, as well as de-identified statistical data. DSACT welcomes and supports the launch of DS-Connect and encourages our members to consider registering their loved ones. Find out more and register at  https://dsconnect.nih.gov/.


Update on Down Syndrome Cognition Research

On September 17, 2013 DSACT and a number of other local organizations were honored to host a most important presentation on the UT campus.  Dr. Michael Harpold, Chief Scientific Officer of the Down Syndrome Research and Treatment Foundation and Dr. Jon Pierce-Shimomura, University of Texas Assistant Professor of Neurobiology spoke to a crowd of over 100 guests about the latest advances in the world of Down syndrome research. Dr. Harpold spoke about the current state of developing potential therapies from laboratory through clinical trials. Dr. Pierce-Shimomura spoke about dramatic current progress in translating discoveries into new therapies. Handouts from each speaker are here:

Mind to Lab Bench to Bedside – Dr. Michael Harpold

DSRTF Fundraiser Presentation – Dr. Jon Pierce-Shimomura

Enjoy the video as Drs. Harpold and Pierce-Shimomura discuss the outlook for improving cognition and memory in people with Down syndrome in the near future. We are proud that this event, in combination with a generous match from DSRTF, raised over $20,000 for DSRTF-supported research. Please join DSACT in thanking our event co-sponsors Down Home Ranch, Marbridge, Ruby’s Rainbow, The Rise School of Austin, LLQ USA and Upside of Down, as well as Bishop Legal and Wright Watson and Associates for video production.


Current State of National Down Syndrome Research

On October 27, 2011, DSACT and The Rise School of Austin were honored to host a most important presentation.  The University of Texas’ Dr. Jon Pierce-Shimomura, Assistant Professor of Neurobiology, spoke to a crowd of about 100 very attentive guests about the latest advancements in the world of Down syndrome research.

Dr. Pierce-Shimomura outlined the fascinating work being done on DS at his lab using c. elegans worms.  He also discussed important work being done by others around the country.  Enjoy the video as he discusses his optimistic outlook for improving cognition and memory in people with Down syndrome in the near future.