During Rare Disease Week, head to Aeronaut in Somerville on March 2nd (Sat) from 12-2pm to learn more about a local young boy’s rare disease journey. You may even get to meet him!

A year ago, Baby Lukie was diagnosed with a very rare disease called ZTTK, discovered only in 2016. There are no known cures or treatments.

At 18 months, Lukie is tube-fed and has not crawled, walked, or talked. He is also at high risk for seizures, and little is known about how the disease will progress.

Lukie’s parents Ada and Nathan are racing against the clock to work with world-class scientists to develop a cure for Lukie and other ZTTK patients.

This event is FREE, and there will be beer and food (for purchase) at Aeronaut.