Why the Down Syndrome Community Needs to be Involved in Scientific Research

As a recent graduate from UC San Diego in General Biology, I have taken an interest in scientific research while working in Rob Knight’s lab for microbiome research. With the various health complications that Michael has experienced while we were growing up, I have fallen in love with medicine, and have future prospects of delving into integrative medicine in the upcoming years.


Through all of these years with Michael in my life, I always asked myself,


“Why  is the Down Syndrome community important? Why do we need to keep individuals who have Down Syndrome in our society?”


After growing up with Michael, it’s the genuine kindness and love that radiates from these individuals that’s what our society needs today. As many other individuals who have DS, Michael expresses love to others in an inclusive manner, and doesn’t care about someone’s appearance, their sexual orientation, their race, or gender. Our world today needs more loving, and individuals who have DS are the prime leaders in this.


But, these individuals are even more important than many realize. They may hold some answers in treating cancer, stroke, and other conditions. And this not only applies to helping the general population.



Rather than “curing” Down Syndrome, I seek to find medical treatments to alleviate symptoms that are co-morbid with Down Syndrome, while providing a means of improved public health recommendations for these individuals. All in order to improve their quality of life.


Just in the 1980’s, the average life expectancy for an individual who has Down Syndrome was around 25 years. Advances in research have helped alleviate symptoms of other diseases that are co-morbid with Down Syndrome, including congenital heart disease, hyperthyroidism, and gastrointestinal problems. Nowadays, these individuals have a life expectancy around the age of 60 and can live more fulfilling lives.


Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers?


Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome have  a part of the 21st chromosome amplified. This section of the 21st chromosome may carry a “leukemia oncogene,” which is essential for scientists to study. Not only could this alleviate the amount of cases of leukemia seen in Down Syndrome, but this information could also be essential in treating Leukemia among the general public


Joaquin Espinosa, who runs the Espinosa research lab at the University of Colorado Denver, specializes in Down Syndrome and cancer research. His team is currently finding ways to alleviate co-morbidities found with Down Syndrome. He also passionately writes about the importance of including persons who have Down Syndrome into scientific research, as funding for Down Syndrome research is considerably lower than for other conditions.


I am also ecstatic to share that we have created a Down Syndrome cohort in the American Gut Project in our lab! I work in Rob Knight’s lab specializing in microbiome research, and the microbiome of individuals who have Down Syndrome is not well understood. Many of the comorbidities seen in Down Syndrome can be treated, and alleviate some of the symptoms that individuals who have DS may experience.


You can donate to our project here. Any contribution would be greatly appreciated and helps make a difference :)

Julia ToronczakComment