The Jérôme Lejeune Foundation will present two sessions at the 2012 Conference of Down Syndrome Affiliates in Action (DSAIA).
Fri Mar 2nd, 3:15 pm - 4:15 pm
Overview of Legislative Initiatives Affecting the Down Syndrome Community
There are over 400,000 individuals in the U.S. with Down syndrome, yet funding for DS research related to other genetic disabilities is severely limited. Also, with new prenatal screening technologies available the issue of informed consent is more critical than ever. This session will provide attendees with an overview of legislation recently introduced which is intended to increase funding for research and also the status of informed consent legislation and the federal and state level.
Sat Mar 3rd, 10:30 am - 11:30 am
The Jérôme Lejeune USA Foundation as a Resource to Researchers and Advocacy Organizations in the U.S.
The Jérôme Lejeune Foundation was established in Paris in 1996 for the purpose of continuing the work of Jérôme Lejeune, the physician and researcher who, in 1959, discovered the genetic cause of Down syndrome. In 2011 the foundation determined to support the establishment of another foundation in the United States specifically for the purpose of accelerating research and providing the same care and advocacy here that the foundation has provided in France for over 15 years. This session will focus on the 3-fold mission of the Jérôme Lejeune Foundation and how that mission will be formed in the U.S. to provide support to individuals with Down syndrome and their families. An overview of research currently supported by the foundation will also be given.
