Our diagnosis journey is no different from so many other CLN6 families—we share the same grief, the same heartbreak, and the same unanswered questions. Like many others, we were forced into this world of rare disease without warning, and we quickly realized how little support and research exists for CLN6.

As a family, we believe that taking action is a necessary step—even if it comes too late to help our own daughter. This family fund is not just for her. It’s for every CLN6 Warrior, and for every incredible family we’ve met along the way. Each child’s life matters. Each family’s voice matters. Together, we hope to shine a light on CLN6, fuel research, and build a future where diagnosis comes sooner, treatment is possible, and hope is real.



Since our daughter Maryam’s diagnosis, we’ve connected with nearly ten other families whose children have also been diagnosed with CLN6—just in the short time since her journey began. These are only the cases we know about. The actual number is likely far higher, particularly in regions where access to genetic testing remains limited. This underscores what we now realize: CLN6 is more common than previously understood. And yet, dedicated research for CLN6 is still nonexistent. We are hoping we can help to change. Through this family fund, we aim to raise awareness, help to start more research, and drive meaningful progress. Every child deserves a chance at a future—and that starts with being seen, studied, and supported.

We continue to meet CLN6 families from around the world. Many children receive their diagnosis far too late due to limited access to comprehensive genetic testing. With a growing number of newly diagnosed cases, the need for accelerated research and improved early detection is more urgent than ever. Through this family fund, we aim to contribute meaningfully to advancing research efforts, with the hope of driving progress toward,effective treatments, and ultimately, a cure.