Why We’re Here

On January 2, 2019, our family’s world changed forever. Two years earlier, Jack Ginder Czepiel, our third child, arrived right on time after a normal pregnancy and seemed healthy in every way. On that day, however, a pediatric neurologist told us that something was wrong, that Jack had PURA Syndrome, a rare disorder affecting brain development. At the time, only 300 kids had this new disease, but now that number has risen to 840 cases across 67 countries as new children around the globe are diagnosed nearly every day. 

Today, Jack does many of the things 8-year-olds do: He loves the swing and swimming, has started riding horses (with help!), loves going to school, and he adores food, especially cheese! He loves when Kyle and Jean, his parents, read books to him - which often prompts contagious laughter from the silly parts of children’s books. His older brother Sid (15) and sister Charlotte (13) adore him.            

Jack is an incredibly hard worker. Almost immediately after we returned from the neonatal intensive care unit at the hospital where he was born, he began physical therapy, occupational therapy, and speech therapy. Thanks to the robust New York State Early Intervention program, we did not miss a beat supporting Jack right away.  

When Jack was diagnosed with PURA Syndrome four years ago, we learned everything possible about the disorder and connected with other families facing similar challenges including weak muscles (hypotonia), sleep apnea, seizures, feeding difficulties, and many other issues.  

Jack’s Tomorrow is committed to funding scientists to use cutting-edge research tools to find a treatment for PURA Syndrome. Join Jack’s Tomorrow on this journey to make the best tomorrows possible while pushing the boundaries of today.