By Mary Pritchard, Contributing Writer
Marlborough – Formerly known as the Down Syndrome Research and Treatment Foundation (DSRTF), the LuMind Foundation marked their 10th anniversary with a new name. With board members and events all over the country, and its home office in Marlborough, LuMind focuses on Down syndrome (Ds) cognition research.
“The foundation was founded by two couples – Roger and Dawn Kafker, and Jim and Patty O’Brien White, who each had children with Down syndrome,” Executive Director Carolyn Cronin said. “They were involved in Down syndrome organizations and, while there were lots of services in their communities, they wondered what else was out there for the future of their children.”
According to their website, LuMind is “lighting up the future with a new name and exciting progress. ‘Lumen’ is a measure of light. We are combining the word ‘lumen’ with the word ‘mind’ to suggest that we are bringing light to the science of cognition As we continue to shine a light on cognition research and brighten the minds of individuals with Down syndrome, we are excited to move into our second decade with an identity that underscores our progress, mission and values.”
Cronin said that there has been so much success in the first 10 years and the new name reflects brightness, potential and lighting the future.
“LuMind has funded more than 10 million dollars in research,” she explained. “Our mission is to stimulate research to significantly improve cognition, including memory, learning and speech, so individuals with Down syndrome can lead more active and independent lives, participate more successfully in school and employment, and avoid additional cognitive decline associated with early onset Alzheimer’s disease. Our foundation is opening doors – people in the Down syndrome population are pioneers making a difference in the lives of the general population. Our research not only benefits Down syndrome but benefits the Alzheimer’s community as well.”
Cronin, who has worked in nonprofit organizations for many years, has a very personal connection to the work of the foundation.
“My 2-year-old great-niece, Quinn, has Down syndrome,” she said. “I think of Quinn and also my father, who recently passed away from Alzheimer’s disease. The progress is swiftly moving along and the parallel is Quinn having an opportunity to help people like my dad. I think about when Quinn is older and her parents have given her everything they can, and after all that time and energy, if they had to see this beautiful little girl decline like my dad did – I don’t want to see anyone go through that.”
Cronin said that in her years working in nonprofit organizations, she has never seen things move so swiftly in the area of research as it has in the Ds community in cognitive research. She explains that because of the founders who brought so much possibility to the forefront, the funding, and the focus of LuMind, things are moving forward at a faster pace and opening doors to more potential.
The website refers to the connection of Ds research to Alzheimer’s disease, stating “opportunities for study and testing of new drug therapies are limited because it is difficult to determine who will develop Alzheimer’s disease early. The near universal development of Alzheimer’s disease neuropathology in persons with Down syndrome offers insight to identify and develop effective therapies for Alzheimer’s disease in all individuals.”
Cronin said LuMind currently funds top researchers at Johns Hopkins, University of California San Diego, Emory University, University of Arizona, Stanford University, and VA Palo Alto Health Care System.
“Our Scientific Advisory Board lead by Dr. Michael Harpold identifies the most promising research,” she said. “LuMind is not in competition with any other organization because we are so focused on our mission. I believe it’s because of that focus that we’ve been able to accomplish so much and our research has been very successful.”
For more information, visit www.lumindfoundation.org.