At just 37 years old, Bernie Zipprich’s world looks different than it did five years ago, now each step is measured. His speech, slowed. His movements, careful.

At the center of his world: his work, his family and the fight he refuses to back down from.

“It is hard, but I try to focus on the positive,” Bernie said.

Bernie was diagnosed with sporadic ALS in early 2020, when he and his wife Mehreen were still newlyweds.

“A way in which we handle, deal with this disease is to live in the present,” Mehreen said.

At first, the signs were subtle, weak hands, physical therapy sessions. Then a nurse noticed something more, his muscles were wasting away. What followed was a terminal diagnosis.

“There’s a lot of denial. No, it couldn’t be ALS. I think they’re wrong,” Mehreen said.

ALS affects fewer than 30,000 Americans. Most live just two to five years after symptoms begin. Bernie, though, is now more than five years in.

“No two cases are alike,” Bernie said.

That very idea is the heart of Project Mosaic, the startup Bernie launched a year-and-a-half ago.

It connects researchers and labs to build more accurate models of sporadic ALS, the most common and least understood form of the disease.

Project Mosaic uses patient blood cells to understand how the disease and treatments behave in different people. The aim is to match the treatment to the patient.

“It brings us a lot of hope because you feel so out of control with a diagnosis like ALS,” Mehreen said.

Bernie’s diagnosis came just before his son Elias was born. As his child learned to walk, Bernie began to fall.

His mission is now even more clear, push the science forward and make the most of what time remains.

“If I can’t be there in the way that I would like to, then at least he will know that he is loved,” Bernie said.