Moebius Syndrome Foundation

Living With Moebius Syndrome

Moebius syndrome is a life-long condition. How it affects someone depends on their age and life stage. Children with Moebius syndrome face unique challenges as they navigate medical diagnosis, treatment, and therapies. Teenagers may face additional social isolation as they navigate through middle school and high school. Adults with Moebius syndrome may face challenges in seeking employment and dating while they manage their own medical care. General information on Moebius syndrome and a few personal stories are shared below; we encourage you to navigate Living with Moebius syndrome section of the website to your current age and stage to find the information most relevant to you.

March 2023

Growing Up With Moebius syndrome

You may know her as @kaikiger on TikTok with more than 22,000 followers, but to us, she’s Kailynn Weaver. In this personal video, Kailynn and her father, Rodney, tell their stories of receiving a Moebius syndrome diagnosis and growing up with Moebius syndrome. 

September 19, 2021

Moebius Syndrome Panel: General Information About Living With Moebius Syndrome

Moderator: Greatness Adewumi

Panelists: Kathleen Bogart, Bryn Webb, Roland Bienvenu, and Steven Maldonado

Moebius syndrome - A Personal Journey

Matthew S. Joffe, MA, Director, Education and Outreach and a Wellness Counselor in the Wellness Center at LaGuardia Community College/CUNY, discusses growing up with Moebius syndrome and navigating a career and leadership role in “Moebius syndrome: A Personal Journey.”