Last month, we shared a piece of research that caught our attention because it raised a question we had not seen discussed very much in connection with Moebius syndrome. The study involved a child with Moebius syndrome who also had several other differences present from birth. Instead of only looking for a change in the child’s genes, researchers also looked at something called a DNA methylation pattern. In simple terms, this is a way of looking at how genes are being control

This is a follow up to my last Blog "Do We Know More About the Cause of Moebius Syndrome Than We Think?" When I wrote Do We Know More About the Cause of Moebius Syndrome Than We Think?, I was trying to ask a research question. I wanted to know whether the things researchers have already learned about Moebius syndrome might give us clues about what happens during early development. What I didn’t expect was for some parents to read the article and begin questioning their own pr

I’m not a doctor and I don’t play one on TV or on the internet. I’m just an ordinary person who has lived with Moebius syndrome for 63 years. But sometimes I think medicine can benefit from a set of untrained eyes looking at something and asking a question that may have been overlooked simply because everyone has gotten used to looking at it the same way. So here is my observation. It isn’t a medical conclusion, and I’m certainly not suggesting that I have figured out somethi

Every once in a while, a research paper comes along that makes scientists stop and take a closer look. This appears to be one of those papers. Researchers at Cincinnati Children's Hospital recently published a case report describing an infant with Moebius syndrome and several additional congenital differences whose DNA showed a pattern that researchers had not previously reported in someone with Moebius syndrome. While this does not answer the question of what causes Moebius

Rare disease communities are small. That’s just the reality. Because of that, people rely on each other more than most realize—for information, for support, and sometimes just to know they’re not alone. When things are working the way they should, people can find what they need without jumping through hoops. They can connect, learn, and move forward. Where it starts to break down is when organizations begin positioning themselves as the place. The main hub. The central voice

Every year, awareness days give people living with rare conditions a moment to be seen in a world that often overlooks them. Two of those days—Rare Disease Day and Moebius Syndrome Awareness Day (MSAD)—exist for the same reason, but they are built and carried in very different ways. That difference matters. Not because one is more important than the other, but because how awareness is built shapes who owns it—and who decides what it becomes. How Rare Disease Day began What ma

Many Faces of Moebius Syndrome was never built around a single moment—or a single day. While many people first discover MFOMS through Moebius Syndrome Awareness Day, what often comes as a surprise is how much exists beyond it. The stories, connections, and support that define this community continue every day of the year. MFOMS is built first and foremost around real voices. At the heart of the site is Moebius Voices —a growing collection of personal stories shared by individ

Josie In the Culpeper area, three people live with the same rare neurological condition. One is a senior. One is an adult. One is a child. In a small community, that isn’t something you expect to find. Moebius syndrome affects facial movement. People with the condition cannot smile or show typical facial expressions, even though they experience emotion like anyone else. It is considered rare, and for many people, that word carries an assumption: rare means distant, abstract,

Colors often carry meaning long before we notice them. In health advocacy especially, certain colors begin to feel familiar, even expected, without us ever stopping to ask where they came from. This post takes a quiet look at one of those colors—how it came to be associated with dignity and care, and why its presence today reflects a much longer history than many people realize. Purple is a color many people recognize in health and disability spaces, but few stop to ask why i

Earlier this year, Kentucky issued its first-ever statewide proclamation recognizing Moebius Syndrome Awareness Day. This was also the first and only year we have ever sent out proclamation requests. Only one came back approved — and that naturally raises the question: why just one? The answer is straightforward. Moebius Syndrome Awareness Day is still not well known, especially within government offices. Some officials misunderstood the request as a commercial effort. Other

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