As those with Down are living longer than ever, researchers are working to improve the quality of their later years.
The Alana Down Research Center will bring together biologists, engineers, and students to examine the condition in the hope of improving the quality of life for those born with Down. The project comes at a time when the life expectancy of people with Down Syndrome has skyrocketed from about 25 years to about 60.
Dr. Nicole Baumer, director of the Down Syndrome Program at Boston Children’s Hospital, who is not involved with the MIT project, told the Boston Globe:
“This is a real game-changer for the Down syndrome community. This type of research center will really help improve our understanding of the underlying mechanisms.”
The center’s creation is thanks to a massive $28.6 million donation from the Alana Foundation, a nonprofit founded by Ana Lucia Villela and Marcos Nisti, a wealthy Brazilian couple who have a young daughter born with Down syndrome. According to MIT this was one of the largest single endowment they’ve ever received.
Down Syndrome is the most common form of mild to moderate intellectual disability, which affects nearly one in 700 babies born in the United States. The syndrome causes those born with it to have an extra chromosome or portion of a chromosome in some or all of their cells.
Angelika Amon, a molecular and cell biologist who will serve as the center’s co-director, said, “A large group of the population thinks people with Down syndrome are an important part of society and should be included.”
According to the Boston Globe, the new center will combine research in the fields of biology, engineering, and computer science to examine ways to improve cell function in people with the syndrome. They will also work to enhance social and practical skills, as well as create a 3D map of the brain in order to scrutinize the effects of the syndrome on brain cells.
“I really want people with different conditions and different ability to feel they are not different, to feel that they belong, and to enhance their capability to interact and to enjoy life,” said Li-Huei Tsai, director of MIT’s Picower Institute for Learning and Memory and co-director of the Alana Down Syndrome Center.
Tsai has conducted research on Alzheimer’s disease, which affects nearly 50% of those with Down Syndrome by the age of 60. The research team will study the connections between each condition in hopes that the results will yield a greater understanding of both of them.
Dr. Peter D. Bulova, director of the University of Pittsburgh Adult Down Syndrome Center, noted that the new center will become the top center for Down Syndrome study, as the disorder receives far less financial support than other genetic illnesses such as cystic fibrosis. The only other center which will be close to MIT’s level is the one at the University of Colorado.
Since the life expectancy of those with Down has risen so quickly, there is not a lot of current research available of adults over the age of 30 with Down Syndrome. Researchers believe that by studying Down Syndrome, we may receive answers to other conditions which remain mysterious. For example, people with Down syndrome are less susceptible to certain types of cancer. Determining why this is could open the doors to new cancer treatment and prevention strategies.
“The investment is going to guarantee and give us tranquility that the research we started these past years is going to continue forever,” Villela said. “I hope what comes from this center is how important diversity is for humanity.”
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