Dr. Bryn Webb is board certified in clinical genetics and pediatrics and is an associate professor in the University of Wisconsin-Madison Department of Pediatrics’ Division of Genetics and Metabolism. She has presented at numerous Moebius Syndrome Foundation Scientific Symposiums, has worked with many individuals who have Moebius syndrome, and is the research committee chair at the Moebius Syndrome Foundation.
Dr. Webb resides in Madison, WI.
Tell us your name and position (executive committee, staff, board member).
Bryn Webb, MD, Board Member and Research Committee Chair
Why is it important for you to serve on the Board of Directors?
I’ve been deeply impacted by meeting the adults, children, and families affected by Moebius syndrome in my clinical practice and through participation in MSF meetings. Many of these families have been my most memorable and favorite patients. From my first contact with the MSF as a physician in fellowship, I have always been impressed with the advocacy and opportunities provided by the MSF for this rare disease community, and I was eager to become more involved when given the opportunity. The MSF is a phenomenal organization. As a geneticist I evaluate many patients with rare diseases and by far for most diseases, there aren’t strong patient advocacy organizations that can offer families support. The MSF is special – created by a group of parents more than 30 years ago in a living room and has grown to such a powerful organization that does amazing work for this community.
What does the Moebius Syndrome Foundation mean to you, personally?
I enjoy helping to provide a community for persons affected with this rare disorder so that children and adults do not feel as alone.
I also like to facilitate research opportunities for those affected with Moebius syndrome and hope that the MSF community feels empowered as they are improving knowledge of Moebius syndrome and treatment options for themselves and others.
What might the Moebius Syndrome Foundation community be interested to learn about you?
I’m originally from Texas, but consider myself a New Yorker after living in NYC for over a decade, but now have found myself transplanted to Wisconsin.
What do you want the Moebius syndrome community to know about the Board of Directors and what we do?
We collectively aim to improve awareness, improve treatment, and provide resources for individuals with Moebius syndrome and their family members.
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?
For community members, please reach out to me if you have ideas of research questions that you would like to be addressed.
Email : bryn@moebiussyndrome.org