The Next Chapter: A Virginia Nonprofit Organization

Dear Friends,

I am very happy to share that Many Faces of Moebius Syndrome has entered a new chapter as a Virginia nonprofit organization.

This is not the beginning of MFOMS. It is the continuation of something this community has been building together since 2009.

We started with 14 stories and grew into a global community. Along the way, we founded Moebius Syndrome Awareness Day, created resources for families, shared stories, published books, visited schools, supported awareness efforts, and helped connect people with Moebius syndrome and their families around the world. So many people have been part of that journey, and each of you is part of MFOMS’s history.

Over the past year, we have spent a lot of time thinking about what comes next and what MFOMS needs in order to continue serving the community for many years to come. We have rebuilt resources, strengthened our website, expanded our educational materials, developed clearer governance, and put stronger plans in place for the future.

I have personally covered the startup costs of establishing the Virginia nonprofit. I chose to do that because I believe in MFOMS and, most importantly, I believe in this community.

As we move forward, the community will continue to come first. MFOMS will remain community-run, with leadership coming from people with Moebius syndrome and their immediate families. Good governance and financial accountability will matter, and important information and resources will remain accessible without requiring people to donate.

We also want to do more with the resources we have created. One of our goals is to place books such as The History of Moebius Syndrome and the Understanding Moebius Syndrome Guide into schools and medical centers where they can help educate others about Moebius syndrome, at no cost to the people receiving them.

I hope you will visit https://www.mfoms.org/about-us and take a look at what we have been working on. You can meet our Board of Directors, read our Commitment to the Community, learn more about how MFOMS is governed, and visit our Future Leadership page to see if you would like to be part of the next generation of MFOMS.

Although we are beginning this new nonprofit chapter, we will not begin accepting general donations immediately. October is for Moebius Blessings! The program began during the years of the Colorado corporation, and we remain very thankful to the former Board members who dedicated their time, money, and effort to help make it an annual tradition. Today, Moebius Blessings gives people the opportunity to provide a Christmas gift for someone with Moebius syndrome in the United States who would like to receive one, and as the program grows, we hope someday to include more countries as well. For now, one of the best ways you can support MFOMS and the greater Moebius syndrome community is by becoming a Moebius Blessings Giver. https://www.mfoms.org/moebius-blessings

Thank you to everyone who helped us reach this point and everyone who will be part of what comes next.

Tim Smith

President & Founder

Many Faces of Moebius Syndrome

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