Family-Driven UBE2A Research: A Major Milestone and $20K Seed Grant!

Back in February, I shared that I was working with Mayo Clinic and the University of Minnesota to get researchers involved in understanding UBE2A deficiency syndrome. After years of hard work and collaborating with researchers who are as passionate about this cause as I am, I am thrilled to share some groundbreaking news!

Our idea for family-driven research has been approved by Mayo Clinic’s ethics board. This is a huge step forward for UBE2A families everywhere, and I couldn’t be more excited. To top it off, we've already secured a $20,000 seed grant to kickstart the research!

This is a monumental achievement for the UBE2A community. As many of you know, when Abram was diagnosed with UBE2A at age 3, we were told he was the first case the geneticists at the University of Iowa had ever seen. For years, we felt like we were navigating this rare disorder on our own. But now, with the support of Mayo Clinic, the University of Minnesota, and the researchers who are joining this journey, we’re making real progress toward understanding UBE2A and improving the lives of families affected by it.

The funding we’ve secured will help us launch this family-driven research project, with the goal of building a stronger body of knowledge about UBE2A that will benefit not just Abram but every other family living with this disorder. I’m so grateful for the opportunity to work alongside such dedicated researchers and advocates who share the vision of providing meaningful, actionable data that families can use to navigate their child’s care.

This is just the beginning, and I’m beyond honored to be a part of something so impactful. I can’t wait to see where this journey takes us and how it will benefit future generations of UBE2A families.
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Thank you for your continued support. We’re making history together!