MOEBIUS SYNDROME IN THE NEWS: MAKING MOEBIUS "THE NEW NORMALITY"

A terrific article on the founder of the Many Faces of Moebius Syndrome website and one of the biggest ambassadors and awareness-spreaders of Moebius anywhere--Tim Smith.  Read on:

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From his basement apartment in rural Spotsylvania County, Tim Smith is reaching out to others—across the globe—who have the same unusual disease he does.
At first, the “power of the Internet” allowed him to hear from other Americans with Moebius syndrome, an extremely rare neurological disorder that causes facial paralysis.
These days, his keystrokes connect him with a worldwide audience.
The Facebook page he started, the Many Faces of Moebius, had 2,000 followers in February 2012, when he was featured in The Free Lance–Star.
Less than two years later, on Jan. 24—the day people wore purple shirts or carried balloons of the same color to bring awareness to the disease—the audience had more than tripled.
Smith estimated that almost half of his site’s 6,403 followers live outside the United States.
“Facebook has opened up a new medium for people to connect, all over the world,” he said. “The only problem is the language barrier. You have to be careful [because translations aren’t always accurate]. I actually have insulted people before.”
‘OUT OF THE DARK AGES’
Despite the occasional mishap in messages, Smith has developed a global platform.
He’s encouraged people to do interviews with local media outlets in an effort to “take Moebius syndrome out of the Dark Ages and make it into a kind of new normality, if you will.”
He shares links to all those stories on Facebook, as well as hundreds of photos.
Jennifer Allaby of Canada is one of 35 people from 12 nations whom Smith named a global ambassador. She recently told her story in a radio segment and was amazed by the response.
“This has been a wonderful experience, and I’ve even found three other Moebians right here in Saskatchewan,” Allaby said. “After nearly 45 years, I will finally meet another Moebian. Incredible.”
Those with the syndrome, pronounced “mo-E-be-us,” can’t smile or frown, laugh or grimace, blink or move their eyes from side to side because of the facial paralysis.
One mother in England said her infant son “constantly looks grumpy” because of the paralysis.
Smith worked with Fresh Printz, a Culpeper County company, to print and distribute shirts about the unusual condition.
One of them reads: “We smile from our hearts.”
IN HONOR OF HANNAH
It’s not known how many people have the syndrome. Researchers estimate that the condition affects one in every 50,000 to 500,000 newborns, according to Genetics Home Reference.
Moebius is considered genetic and is one of more than 7,000 rare diseases. The syndrome also causes limb deformities and problems with speech, vision and breathing.
Smith is 50, has a speech impediment and talks fast. That’s why electronic communication has worked so well for him.
Online, he often shares his story: that he was “labeled as being retarded” at birth and that fellow students and teachers made fun of the way he looked and talked.
He grew up in Alexandria, where his parents were told repeatedly that their son wouldn’t live to see adolescence. As it turned out, they both died of cancer before he was 15.
He was in his early 40s when he came across the diagnosis “Moebius syndrome” in his medical file. He’d never heard the term before. As he researched, he looked for others with the disease.
He met the mother of Hannah Devine, a child who was born with Moebius and died before her second birthday. Smith stood over Hannah’s grave in Spotsylvania, wondering why their lives turned out so differently.
“I was spared and she wasn’t,” he said in 2012. “Why did I deserve to live?”
He pledged to educate others in honor of Hannah and others like her.
‘THANKS TO YOU, TIM’
Smith works as a cashier at the Walmart near Wilderness and spends three or four hours a day on Moebius syndrome websites. He’s big on photo galleries, and people in Venezuela and the Philippines, South Africa and Australia respond to his request for photos of activities.
“We took in approximately 730 photos from people all over the world showing support for Moebius syndrome,” he said about international awareness day.
The site has 152 standing profiles of people with the disease, and Smith spotlighted one or two “holiday heroes” each day from Nov. 1 to Jan. 24.
He doesn’t earn a dime for his efforts, just the gratitude of those who benefit from them.
“Big thanks to you, Tim, as your job just never ends,” wrote Kay Cheryl Jacobs of the western cape of South Africa. “I know it’s rewarding but you really put in so much, while all of us sit back, click on the link and find updates on the website.”

Tim Smith has established the Many Faces of Moebius Syndrome online and on Facebook. Both pages have the same name.
The website features profiles of people in its community, global ambassadors who try to educate others through the media and those selected as holiday heroes. The site also has photos of Moebius syndrome angels, mostly children, who have died.
The Facebook page shares the links to stories about Moebius syndrome and hundreds of photos of support groups from the Philippines, videos from Venezuela and lots of purple-shirt wearers across the United States.
ON THE NET: manyfacesofmoebiussyndrome.com