The LuMind Foundation (formerly Down Syndrome Research and Treatment Foundation – DSRTF) was a 501(c)3 founded by two families in 2004 soon after the decoding of the human genome, which opened the door to biomedical research in the field of cognition research for individuals living with Down syndrome. The mission of the organization was to stimulate biomedical research to develop treatments to improve cognition, including memory, learning and speech. DSRTF soon became the largest non-governmental source of funding in the United States for biomedical research for individuals with DS, granting to top universities including Stanford University, Hopkins University, and the University of California San Diego, among others. DSRTF was renamed to LuMind Foundation in [2015].
LUMIND FOUNDATION
Founders
Patty and Jim White
Honorary Board Members and Key Other Members
Amy Allison
Ann Margaret Christy
Jim Dovey
Margie Doyle
Patty White and Dan Flatley
Ryan Hartman
Stephen Lazare
Jane Lodato
Darryl Mikuni
Bill Mobley
Anthony Providenti
Vince Randazzo
Roger Reeves
Sarah Wernikoff
RDS FOUNDATION
The Research Down Syndrome (RDS) Foundation launched in 2009 with a goal of accelerating the development of new opportunities and independence for people with Down syndrome through emerging science. Based in Chicago, RDS focused on the development of national initiatives to catalyze research, generate public awareness, and increase fundraising for Down syndrome research. Key initiatives included the Light the Way campaign with the spouses of US state governors, launching a running program to provide a platform for athletes around the country to support research, offering research seminars around the country, and organizing a network of gala events. RDS formally merged with DSRTF in February 2015 and the combined organization became known as the LuMind RDS Foundation.
Founders
Bob Schoen
Honorary Board Members and Key Other Members
Karen Shea
INTERNATIONAL DOWN SYNDROME COMMUNITY (IDSC)
The International Down Syndrome Community (IDSC) began informally in 2008 when a group of moms from around the world answered a need in the Down syndrome community to provide a safe forum for parents to discuss issues ranging from prenatal testing and diagnosis to grief to medical journeys and to find peer-to-peer support and acceptance. IDSC, formerly the International Down Syndrome Coalition, formed as a 501©3 in 2013. IDSC formally merged with the LuMind RDS Foundation in 2019 and the combined organization was renamed to LuMind IDSC Foundation.
Founders
Diane Grover
Kris Delaney
Kayla Glascock
Honorary Board Members and Key Other Members
Shannon French
Michelle Slape
Linda Nargi
Beth Sullivan
Kim Roe
Kim Warren