KiOwana Phillips

Board Member


KiOwana Phillips and her family have been a part of the Moebius syndrome community since 2005. She is married with two boys, one of whom has Moebius syndrome. She is an active-duty soldier who has also served as a Moebius Syndrome Foundation regional coordinator, hosting events throughout the United States. KiOwana holds a bachelor’s degree in criminal justice and a master’s degree in human resources management. She has experience in human resources management, strategic operations and planning, instructing, coaching, mentoring, leadership, and customer service.

KiOwana is very excited to be a part of the team and looks forward to serving the Moebius syndrome community.

KiOwana resides in El Paso, TX.


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

My name is KiOwana Phillips, and I serve on the Board of Directors for the Moebius Syndrome Foundation as well as a Regional Coordinator. 

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

It is important for me to serve on the Board of Directors because I want to be a voice in the community. Our community has grown so much over the past 16 years that I have been a part of it. I have been that mother looking for information and feeling like no one understands my child. It is our job as the board to make the best decisions for our community and foundation while staying true to the mission, providing support, and spreading awareness. 

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

The Moebius Syndrome Foundation means everything not only to me but to my family. Our oldest son Khaleb has Moebius syndrome, and everyone that knows him has heard the words “Moebius syndrome.” The foundation has considerably supported the community’s people and resources. 

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

I am a Sergeant Major in the Army and thoroughly understand the challenges of starting over often and having to educate teachers and providers but also advocate for Khaleb. I also currently serve as a Regional Coordinator for the foundation and have previously served as a Regional Coordinator.

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

We hear your questions, concerns, thanks, and appreciation. We love our community and want what’s best for our community. The Board of Directors aims to look at the entire picture when making all decisions and consider how they affect our community. 

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?

My goals for the community are more fellowship and events regionally, not just during the conferences. Awareness, awareness, awareness. My goal is for Moebius syndrome to be a well-known condition to teachers, health care providers, and other organizations nationally and internationally.

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