People with Down syndrome and their families can help support research into the genetic condition through DownSyndrome Achieves, a Dublin-based nonprofit organization that sponsors a centralized biobank.
The biobank, now based at Cincinnati Children’s Hospital Medical Center, stores blood, saliva and tissue samples for use in research projects, said Lito Ramirez, CEO of DownSyndrome Achieves and the parent of a 14-year-old son with Down syndrome.
Ramirez is a former member of the Franklin County Board of Developmental Disabilities who has long pushed for more attention and investment into Down syndrome research.
“Historically, the community has never had a research anchor,” Ramirez said. “A Down syndrome biobank had never existed as they do for cystic fibrosis, breast cancer, all sorts of things. We’ve had a lack of infrastructure for researchers to tap into.”
And yet, Ramirez said, scientists say that access to biospecimens is their top need. “There are smaller collections at universities; our samples are open and available to any researcher who wants to make life better for people with Down syndrome,” he said.
The DSA biobank is now supporting a National Institutes of Health research project and several others are in the pipeline, Ramirez said. Such work could lead to breakthroughs about conditions associated with Down syndrome – why heart problems and Alzheimer’s are common, for example, or why solid-tumor cancers are rare, he said.
For information about donating biological samples, making a financial contribution or to learn more, go to dsachieves.orgThis link opens another website in a new window.