This condition is characterized by the underdevelopment of the nerves in the face. It can impact speech, swallowing, eye movements, chewing, and facial expressions. It is believed to be caused by a combination of genetic and environmental factors.
Moebius Syndrome Awareness Day (MSAD) was January 24th.
The Start of MFOMS
Tim Smith typically stays out of the spotlight, but a chance meeting caused him to want to advocate for Moebius syndrome awareness. He explains that back in 2008 he met a woman whose daughter had passed away from respiratory complications associated with Moebius syndrome.
He says this encounter caused him to reflect on his own experience with the condition. Doctors didn’t think he would live more than a few hours after birth. Tim knelt next to this child’s grave and wondered why he was allowed to live while she hadn’t been granted that opportunity.
Tim wanted share this little girl’s story and the stories of others living with Moebius syndrome. He also wanted to educate the public. He dreamed of bringing families on shows like Oprah’s to bring patients’ experiences to the public eye.
He started by using Myspace and Facebook to find other patients. Even though this was before social media was large, he didn’t have any trouble finding others in the community. In just a few years, he had over 200 individuals with a story to tell.
Unfortunately, there was a bump in the road. 12 years ago Tim had a heart attack and needed bypass surgery. He spent over one year healing, unable to work.
But, finding the good in the situation, he took the newfound time at home to create the Many Faces of Moebius Syndrome organization. He made a website and a Facebook page which now has 15,000 followers.
In 2019 the organization officially became a nonprofit. This new status allowed it to collect donations, which MFOMS uses to help this rare disease community. It also provides more legitimacy to the group.
When examining the size of the Moebius syndrome community and audience, MFOMS is now the largest nonprofit composed solely of volunteers.
MFOMS is also now a partner with 15 other nonprofit organizations, consistently working to grow their network.
Julius Moebius was the doctor who first documented the condition Moebius syndrome. Moebius Syndrome Awareness Day occurs on Dr. Moebius’s birthday.
The awareness day was originated by Smith’s foundation in 2010. The Board of the organization knew they wanted to plan something big to spread awareness – something that no other group had ever done.
In 2011, a TV station in Australia covered a story about a young boy with Moebius syndrome and the nonprofit Many Faces. This story was then picked up by other media outlets including CNBC. This coverage made the awareness day a huge success.
Now, every year, MSAD is celebrated internationally.
You can read more about this condition and Tim’s story here.