Crowdsourcing Medical Research

After learning that both of her young children had pseudoxanthoma elasticum, a rare genetic disorder that results in accelerated aging in those affected, Sharon Terry and her husband decided to do what she could to learn about this disease.

After learning that the limited research that is conducted on this genetic disorder is not shared between researchers, Terry and her husband wanted to help put in a system where researchers were more focused on alleviating suffering than in competing with one another. Although they had no science background, the pair started collecting blood, tissue and the medical histories of people suffering with PXE and required that all the scientists that use these resources would share results with each other, and the people who donated. Eventually, they established PXE International – a resource that supports individuals dealing with PXE, and promotes research for the disease.

After a few years of their tireless work, Sharon Terry and her husband found the gene that causes the disease that both their children live with. The two continue to promote crowdsourced, freely available research with the help of citizen scientists and activists, and invite people to embrace their fears in order to become more productive in their efforts to change the world.