Families play a vital role in advancing our knowledge of neurodegenerative diseases and serve as partners in our search for a cure. Identifying a genetic reason for the disease within a family is a devastating and life-changing event. However, many families use this knowledge to become advocates for more and better research into the disease that may affect their future generations. Much scientific advancement would not be possible without their generous involvement.

In 2008, we began enrollment for an exciting new project. Using technology first developed by Shinya Yamanaka, we have embarked on study of induced pluripotent stem (iPS) cells. Through this project, skin biopsies are collected from individuals with neurodegenerative disease and their unaffected family members and “reprogrammed” from skin cells into neurons. Using this method, scientists aim to better understand the disease itself and investigate possible treatments.

A large family in Mexico was one of the first to enroll in the study. They were aware of the strong family history of neurodegenerative disease and wanted to take action to protect future generations. In their quest for a cure, they not only agreed to participate in the study, but also facilitated the collection of biopsies in their home country and enrollment of other family members. Scientists and family members remain hopeful that through their small sacrifice much will be learned for future generations.