- Who We Are
- About Moebius Syndrome
- Living With Moebius Syndrome
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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.
“I believe that thriving is not one thing, one goal, or even one feeling state. It is loving and valuing yourself during your journey, nurturing the parts of you that struggle and celebrating the parts that shine.”
“If somebody thinks you don’t belong and you cannot contribute, ask yourself whether that is really the right attitude or whether that person might be a bit uncertain because they’ve never met somebody with Moebius before. ”
“You are the only one in the world with your face, and just like a rare gemstone, you shine bright, and the people who matter most will see your light and beauty. ”
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.
Moderator: Greatness Adewumi
Panelists: Kathleen Bogart, Bryn Webb, Roland Bienvenu, and Steven Maldonado
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.”