Our Story

In 2025, Beyond Primrose ZBTB20 Foundation was born when parents of newly diagnosed children with Primrose Syndrome were told there was “nothing that could be done,” and refused to accept that answer.

What began as a search for hope, awareness, and support quickly grew into a global movement. Families from around the world came together with a shared belief that progress was possible. Within months, Beyond Primrose ZBTB20 was incorporated as a 501(c)(3) nonprofit, a contact registry was initiated, regular community family meetings were established, and early research efforts, including functional assays and two drug repurposing studies, were already underway.

From the beginning, we recognized the importance of building a strong and thoughtful foundation for long-term impact. To guide this work, we established a multidisciplinary Scientific Advisory Board (SAB) to help prioritize research, evaluate opportunities, and ensure that all decisions are grounded in scientific rigor and clinical relevance.

Our early research priorities include the development of a formal, IRB-approved patient registry; functional assays to better characterize ZBTB20 variants; biomarker discovery; creation of fibroblast, iPSC, and mouse models; drug repurposing initiatives; and a longitudinal natural history study; and exploring gene therapies options that could show true promise for our Primrose community.

Built from love, determination, and the belief that every child deserves hope, Beyond Primrose ZBTB20 Foundation exists to change the future for individuals and families affected by ZBTB20-related Primrose Syndrome. By accelerating research, fostering a connected global community, and empowering families through education and advocacy, we are transforming uncertainty into possibility and working toward better understanding, better care, and a life where all children have the hope to soar beyond Primrose.