Doctors Track Relatives of ALS Patients for Clues on Disease: Project ALS and Columbia Launch ALS Families Project; Goal of Early Detection and Treatment

Project ALS and Columbia University’s Eleanor and Lou Gehrig ALS Center have opened the ALS Families Project to study relatives of ALS patients who carry genetic mutations associated with the disease.

“Studying the relatives of these patients provides the opportunity to understand the earliest steps in the onset of ALS, which may occur months or even years before obvious symptoms appear,” says Neil Shneider, MD, PhD, who directs the Families Project. “By closely following relatives who carry the same mutation,” Shneider says, “we hope to develop markers of ALS that can guide our efforts to intervene early in the course of the disease.”

“Project ALS recognized an unmet need to follow and examine asymptomatic family members of ALS patients throughout their lives as they, more than any lab model or subject, have great potential to unlock mysteries of the disease, for familial, but also sporadic cases as well,” said Valerie Estess, Project ALS director of research. “We are very excited to partner with Columbia on this program and plan to expand it significantly.”

The program has already enrolled more than 12 pre-symptomatic gene carriers from New York City and elsewhere. Participants will come to Columbia once or twice a year for examination and testing.

Read more about the Families Project and how it will bring us closer to treatments on Columbia Medical Center’s website. Contact [email protected] or 212-420-7382 if you or someone you know would like to participate.

(Photo: Dr. Neil Shneider meets with participants of the Families Project)