Parents + Simons Searchlight = Progress

Parenting a child with a rare genetic neurodevelopmental condition can often feel overwhelming. From managing medical appointments to navigating educational needs, it’s easy to feel like you’re facing these challenges alone. But you’re not alone—and there are resources that can make a difference.

At Simons Searchlight, we partner with families like yours to accelerate research and drive progress for rare genetic conditions. By sharing your experiences and participating in long-term research, you can help uncover valuable insights that bring us closer to improved care, treatments, and hope for the future.

Hear directly from families who have joined Simons Searchlight and see how their participation is making a meaningful impact. Watch our new video and learn how you can be part of this growing community of families working together to advance research.