Mission and History
Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
The Foundation. We are here to support you and your families. Some of you may just be embarking on your journey, while others have been living with Moebius for years. Either way, you have found your home.
History of Moebius syndrome
In the late 1880’s a German physician, Paul Julius Moebius, MD, described the rare neurological condition of a man who had no facial expression, could not blink his eyes and could not move his eyes laterally. For over 100 years relatively little was known about this condition which affects primarily the 6th and 7th cranial nerves, but can affect any of the 12 cranial nerves.
On Dr. Moebius’ birthday each year, the Moebius Syndrome Foundation celebrates Moebius Syndrome Awareness Day.
The Beginning of the Moebius Syndrome Foundation
Two women who lived in California, Vicki McCarrell (pictured below) and Lori Thomas (pictured above with her daughter, Chelsey), both have children with Moebius syndrome. In the early 1990s, there were few resources available and they struggled to find answers. Soon they discovered each other and as luck would have it, they lived less than 20 miles apart! Initial meetings were held in their living rooms and in 1994 the Moebius Foundation was founded. That same year, the first Moebius Syndrome Foundation Conference has heldhas heldn Los Angeles.
Since that time the foundation has grown from a handful of individuals and families living with Moebius syndrome to more than 2,000 worldwide. The foundation hosts a conference every two years and provide extensive support and resources for the Moebius community. It is our hope that families and individuals find the support they need. We offer networking opportunities, education, resources, updates on scientific advances and most importantly, a home.
Moebius Syndrome Foundation
P.O. Box 147
Pilot Grove, MO 65276
Toll-free at: 844-MOEBIUS (844-663-2487)
Contact Vicki McCarrell directly at (660) 834-3406
Have a Question for a Specific Person?
- They send packets of information to all new members. Babies and toddlers receive a Moebius Syndrome with mommy 2 Foundation t-shirt!
- They work with families with newborns who have been recently diagnosed as well as those with older children.
- They provide resources and networking opportunities for adults and young adults living with Moebius.
- They support and fund scientific research into the causes and treatments for Moebius syndrome.
- They send a bi-annual newsletter to all of our members.
- The Moebius Syndrome Conference always add an amazing event and is held every two years.
- They provide financial assistance to families in need through our conference scholarship fund.
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