I am excited to be in the role of Executive Director for MFOMS. I look forward to applying my professional experience of project managing and contractor relationships to help expand the reach and awareness of Moebius Syndrome outside of the Moebius community. I have worked in the commercial construction industry for 35 years with reinforcing steel. As a Detailer and Project Manager I work directly with contractors, engineers, architects, suppliers, and rebar placers to make sure my portion of the project runs smoothly, efficiently and with as little conflict as possible in an ever-changing field. I became a part of the Moebius community since 2009, shortly after my niece was born. Like everyone before me, until she was born, I had not heard of Moebius Syndrome. I have since spent those 10 years helping to raise awareness for this rare and little-known syndrome. As Executive Director of Many Faces of Moebius Syndrome, I look to gain corporate sponsors, expand our outreach in the community and continue to raise awareness worldwide. I have several ideas and plans for MFOMS that will need the support of sponsors and the community to make them a reality, and I hope you will take the journey ahead with us. Thank you for your support.
I was born with Moebius Syndrome. As a child I watched my parents struggle trying to understand my condition without having anyone to turn to for help, advice, or support. In 2008 when I searched social media looking for others with Moebius Syndrome I found very few people There were some Moebius Syndrome organizations out there, but they hadn’t tried bringing people together online. For my parents, I and a few others reached out to everyone we met through email and Facebook messenger and introduced them to each other. Every time we found someone new we would send out messages and emails to everyone. Soon after other individuals followed suit and the online global Moebius Syndrome Community was born. I didn’t comprehend how successful we had been until the summer of 2010 when a moebius mom from New York texted me from a Moebius conference in Colorado saying that there seemed to be a lot of new people there and they were all talking about how I had brought them together. In 2011 we created Moebius Syndrome Awareness Day. Since then we continue to take a lead role in finding new and innovating ways to support and help our global Moebius Syndrome Community. I wrote my first full length novel in my early 20’s. I’ve spent most of my professional career in management. Primarily in the retail book industry and pest control. In the 1990’s while working as a merchandising manager for Borders Book I was honored by a local branch of the NAACP for the work I did promoting Black History Month. In 2010 I had a heart attack and quadruple bypass surgery. After that I semi retired. I currently work for Walmart, drive for Uber, run a seasonal pest control business, and lead the MFOMS.
Hello! My 12-year-old daughter, Dakotah, has Moebius Syndrome. I and my wife have been active members of the online global Moebius syndrome community since its infancy. I graduated from Wright State University in 1986 with a degree in Biomedical Engineering. I served my country for many years as a Captain in the Army. I’m now the owner of Conveyor Technologies Ltd in Cincinnati, Ohio. I was a wrestler in college. For the past thirty years I’ve continued to follow my love of wresting through coaching. I currently coach for Kids club, jr. high and high school. I’m a devoted husband to Stacey Mitchell, whom I’ve been married to for 28 years. Together we have been very active to bring awareness to Moebius Syndrome. In addition to Dakotah, we have three other daughters, one son, and a grandson that we raise. Dakotah had smile surgery five years ago and now has a beautiful smile.
Hi! I am a mom to Kevin, who was diagnosed with Moebius Syndrome as a baby. Over the last 14 years I’ve experienced all the ups and downs of Moebius Syndrome. I’m passionate about helping and serving others in the Moebius community. Eleven years ago my husband and I created Riders for Moebius which has gone a long way in creating Moebius Syndrome awareness. Riders for Moebius 2021 was a huge success and we were able to raise a lot of money which will be put back into the Global Moebius Syndrome Community through the MFOMS. I also have a medical background working as an RN in the foothills of the Rocky Mountains in Colorado. I love being outside and spending time with my family.
I was introduced to the Moebius Syndrome Community after meeting Kacie Nievesmassol at our husbands’ company picnic. In 2010 my husband and I participated in the first Riders for Moebius. I have met so many amazing people, and I have been in love ever since.
For over 15 years I have been the Director of Client Relations for a mailing and fulfillment company in Colorado, where I work with many different non-profit organizations all over the world. Through the years, I have become very familiar with non-profit regulations along with the USPS mailing guidelines and requirements. I am eager to share my knowledge in these areas, including my experience working with print production, donation processing and client communication.
I am excited to be a part of the MFOMS family and Board of Directors. I look forward to helping educate and raise awareness in the community.
Alexis Taylor White-Waller
I was introduced to Moebius the day my daughter was born, 07/20/21. I knew next to nothing about it and soon was forced into a roll of becoming the expert on my daughter for the short period of time she lived. She died of SIDs when she was 2 months old. I didn’t find much of the community or befriend much of the community until after she passed, where some Moebius Moms sent me a care package that I will never forget. Shortly after I discovered the larger part of the community through Many Faces of Moebius Syndrome and have made lifelong friends. Since then, I have made it a mission to create equitable environments both in and out of the work place. The D&I council at my place of employment highlighted Moebius Syndrome for a week during MSAD, that I organized. I have been able to volunteer with Many Faces of Moebius and actively help others in volunteering with the Moebius Community. I held a public event at the OtterShop to bring awareness to Moebius Syndrome and gave resources to customers who’d like to donate or volunteer. I was able to start a project with Many Faces of Moebius and since have made amazing friends and peers. Bringing awareness to facial equity is a passion of mine. I have been described as a powerful force to be reckoned with, so, I’m so excited to help new moms and bring awareness to Moebius Syndrome through sharing my story.
Click here to learn a little more about Alexis’s daughter Celeste.
I was born with Moebius Syndrome. As a child I quickly learned that being different could be used as a strength. I felt unique and had a strong desire to advocate and raise awareness for the syndrome. I began searching on the internet to better understand what Moebius was all about. I met a lot of amazing people along my journey. I’m very grateful to be a part of this beautiful Moebius community. I am now a child psychologist who specializes in motor and sensorial impairments as well as neurodevelopmental disorders. This career gives me the opportunity to support and advocate for children with special needs and their families. I’m very happy to be a MFOMS board member to be able to do the same for my community.