Exciting News – A Game-Changing Opportunity for UBE2A

I’m thrilled to share that we’ve officially met with the incredible teams from Mayo Clinic and the University of Minnesota, and we have an extraordinary chance to contribute to long-term, community-based research in partnership with one of the world’s leading hospitals.

This collaboration is a dream come true. It involves a team of brilliant PhD students, graduates, a renowned professor, and a dedicated researcher from Mayo Clinic, all of whom are eager to support our cause.

​Together, we aim to conduct family interviews via Zoom, listen to your experiences, gather invaluable insights, and ultimately create a comprehensive, depersonalized resource for families affected by UBE2A.

The ultimate vision is powerful: to build a platform of knowledge that not only helps guide families through the unique phenotypes of UBE2A and its comorbidities but also provides documented advice on testing, monitoring, and care. This could lead to the creation of a dedicated website, the establishment of a foundation or non-profit, and a wealth of information that will help families navigate the challenges ahead.
And there’s more—this could lead to funding for future research, and in my wildest dreams, a conference where we can come together as a community to share, learn, and connect!

The next step is simple: if you’re interested in participating in this groundbreaking study, please share your contact info with me. Just a quick note about your son’s story will help us move forward. The research team is already working hard on securing funding and approval at all levels, and they’re committed to providing translation services for anyone whose first language is not English.

Let’s make our voices heard. Together, we can bring much-needed awareness to UBE2A and create something that will have a lasting impact for families everywhere. This is the culmination of 10 years of hard work, passion, and dedication—finally coming to life for all of us!
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With gratitude and excitement,
Abram's Mama.... Erin