Tell us your name and position (executive committee, staff, board member).

My name is Jacob Licht and I am currently the President of the Moebius Syndrome Foundation. I became President a few years ago, but I have been on the Board and associated with the foundation for more than 15 years.

Why is it important for you to serve on the Board of Directors?

When my daughter, Miriam, was born 20 years ago, my wife and I turned to the Moebius Syndrome Foundation for information and connections to help us on our journey. We were able to meet other parents of children with Moebius syndrome, as well as adults with Moebius syndrome, because of the foundation’s resources. I want to be involved on the board in order to give back to people like me and to help the foundation expand its offerings.

What does the Moebius Syndrome Foundation mean to you, personally?

The Moebius Syndrome Foundation means everything to me with respect to the 20 year journey I’ve been on to understand Moebius syndrome in general and my daughter’s Moebius journey in particular. I am also particularly interested in the Moebius scientific community and enabling the foundation to be the leading resource for the medical and scientific aspects of Moebius syndrome.

What might the Moebius Syndrome Foundation community be interested to learn about you?

Although I am not a scientist by training, I have worked in the ‘business of science’ in the biotechnology field for the past 25 years. I love the intersection of complex science and how it impacts lives, so trying to establish links between our scientific community and the Moebius community is a particular passion of mine.

What do you want the Moebius syndrome community to know about the Board of Directors and what we do?

Our Board is a working board, which means that all of our Board members are expected to help the foundation fulfill its mission. The Moebius Syndrome Foundation has a small staff, but our Board members are expected to be deeply engaged in every aspect of the Foundation. The

Board helps organize the conferences, create resources, connect our community, and everything else we do. We spend many evenings on Zoom calls contributing to every aspect of the foundation.

Anything else you would like to add? Any long term goals for the Foundation? Can community members reach out to you if they have any questions or comments about the Foundation/ideas they may have?

I am so honored to serve as the president of the Moebius Syndrome Foundation and I hope we can continue to be the first place people turn on their journeys with Moebius syndrome, whether as an individual with Moebius syndrome, a parent or grandparent of someone with Moebius syndrome, or a medical professional or scientist working in the field.

I love hearing from our community, whether by phone, email, or on social media, And I love being able to make connections within our community.