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Moebius Syndrome

Home » Moebius Syndrome
Woman with Moebius Syndrome Signs International Modeling Contract
Source: Pixabay

Woman with Moebius Syndrome Signs International Modeling Contract

  • Post author:Jessica Lynn
  • Post published:May 3, 2022
  • Post category:Moebius Syndrome

Growing up, Tayla Clement never saw anybody that looked like her in the media she engaged with. You see, Tayla has Moebius syndrome, a rare congenital neurological disorder characterized by…

Continue Reading Woman with Moebius Syndrome Signs International Modeling Contract
Rare Disease Week 2022: I Am Limitless
source: pixabay.com

Rare Disease Week 2022: I Am Limitless

  • Post author:Patient Worthy Contributor
  • Post published:February 22, 2022
  • Post category:Moebius Syndrome

Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…

Continue Reading Rare Disease Week 2022: I Am Limitless
Tim Smith Explains The Origins of the Many Faces of Moebius Syndrome Nonprofit

Tim Smith Explains The Origins of the Many Faces of Moebius Syndrome Nonprofit

  • Post author:Trudy Horsting
  • Post published:February 1, 2022
  • Post category:Moebius Syndrome

Tim Smith is the President of Many Faces of Moebius Syndrome (MFOMS), a nonprofit spreading awareness of the rare condition Moebius syndrome. This condition is characterized by the underdevelopment of…

Continue Reading Tim Smith Explains The Origins of the Many Faces of Moebius Syndrome Nonprofit
Moebius Syndrome Awareness Day is January 24th!

Moebius Syndrome Awareness Day is January 24th!

  • Post author:Trudy Horsting
  • Post published:January 24, 2022
  • Post category:Moebius Syndrome

Moebius Syndrome Awareness Day is January 24th! This event was created in 2011 by the Many Faces of Moebius Syndrome (MFOMS). It is now celebrated across the world, as the…

Continue Reading Moebius Syndrome Awareness Day is January 24th!
Ensuring Inclusion of Moebius Syndrome Candidates in the Age of Virtual Hiring

Ensuring Inclusion of Moebius Syndrome Candidates in the Age of Virtual Hiring

  • Post author:Trudy Horsting
  • Post published:August 25, 2020
  • Post category:COVID-19/Lyme Disease/Moebius Syndrome

In our 21st century world, we have become enveloped by technology. In the age of COVID-19, we are even more reliant. In an instant, so many of our every day…

Continue Reading Ensuring Inclusion of Moebius Syndrome Candidates in the Age of Virtual Hiring
Moebius Syndrome Patient Explains How to Emote While Wearing a Mask
source: pixabay.com

Moebius Syndrome Patient Explains How to Emote While Wearing a Mask

  • Post author:Trudy Horsting
  • Post published:August 3, 2020
  • Post category:Acoustic neuroma/COVID-19/Lyme Disease/Moebius Syndrome/Multiple Sclerosis

Moebius Syndrome Moebius syndrome is a rare condition that causes an inability to move the eyes laterally and facial paralysis. A similar type of paralysis can also occur as a…

Continue Reading Moebius Syndrome Patient Explains How to Emote While Wearing a Mask
What to Do and Where to Go: Observing Moebius Syndrome Awareness Day
source: pixabay.com

What to Do and Where to Go: Observing Moebius Syndrome Awareness Day

  • Post author:Jean Martell
  • Post published:January 15, 2020
  • Post category:Moebius Syndrome/Rare Disease

January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…

Continue Reading What to Do and Where to Go: Observing Moebius Syndrome Awareness Day
What to Know to Help During National Cleft And Craniofacial Awareness Month

What to Know to Help During National Cleft And Craniofacial Awareness Month

  • Post author:Jean Martell
  • Post published:July 12, 2019
  • Post category:Apert Syndrome/Craniosynostosis/Moebius Syndrome

July is national Cleft And Craniofacial awareness and prevention Month! While one of the fruits of summers is time off from school, shortened summer hours, or sunny vacations - it's…

Continue Reading What to Know to Help During National Cleft And Craniofacial Awareness Month
A Moebius Syndrome Story: An Unexpected Love that Crossed the Atlantic

A Moebius Syndrome Story: An Unexpected Love that Crossed the Atlantic

  • Post author:Trudy Horsting
  • Post published:March 22, 2019
  • Post category:Moebius Syndrome

Alex Barker never planned on marrying someone with his same rare diagnosis, but he has to admit, the shared experience has made him and his wife closer. Alex has Moebius…

Continue Reading A Moebius Syndrome Story: An Unexpected Love that Crossed the Atlantic
January 24th is Moebius Syndrome Awareness Day – Learn What You Can Do!
Source: Pixabay

January 24th is Moebius Syndrome Awareness Day – Learn What You Can Do!

  • Post author:Jean Martell
  • Post published:January 23, 2018
  • Post category:Moebius Syndrome/Rare Disease

Tomorrow is Moebius Syndrome Awareness Day! Moebius Syndrome Awareness is celebrated globally each year - with the goal of raising awareness about this rare condition and to educate the many…

Continue Reading January 24th is Moebius Syndrome Awareness Day – Learn What You Can Do!
Couple with Moebius Syndrome Get Engaged
Source: Pixabay

Couple with Moebius Syndrome Get Engaged

  • Post author:Andres Rovira
  • Post published:December 5, 2017
  • Post category:Moebius Syndrome/Rare Disease

Erin Smith and Alex Barker's story is the stuff that dreams are made of. The couple both suffer from moebius syndrome, a rare neurological disorder that causes weakness and paralysis…

Continue Reading Couple with Moebius Syndrome Get Engaged
A UK Moebius Syndrome Miracle
Source: Pixabay

A UK Moebius Syndrome Miracle

  • Post author:Andres Rovira
  • Post published:November 10, 2017
  • Post category:Moebius Syndrome

A UK family was almost certain they'd lose their baby, but it was her giggle that filled them with hope. When she turned 2 years old, Poppy Smith underwent a…

Continue Reading A UK Moebius Syndrome Miracle
Photographer Sheds Light on Rare Diseases in Remarkable Project
Source: Pixabay

Photographer Sheds Light on Rare Diseases in Remarkable Project

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:Moebius Syndrome

Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…

Continue Reading Photographer Sheds Light on Rare Diseases in Remarkable Project
Living With Rare Disease in Trump’s America
Source: Pixabay

Living With Rare Disease in Trump’s America

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:Moebius Syndrome/Rare Disease

A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…

Continue Reading Living With Rare Disease in Trump’s America
Help This Little Girl Battling Moebius Syndrome Get a New Heart
Source: Pixabay

Help This Little Girl Battling Moebius Syndrome Get a New Heart

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:hypoplastic left heart syndrome/Moebius Syndrome

Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…

Continue Reading Help This Little Girl Battling Moebius Syndrome Get a New Heart
Billiard Player with Moebius Syndrome Takes the Gold
Source: Pixabay

Billiard Player with Moebius Syndrome Takes the Gold

  • Post author:Andres Rovira
  • Post published:October 17, 2017
  • Post category:Moebius Syndrome/Rare Disease

David Church is a 21-year-old Professional Billiards player and he has the will power of a Saint. He suffers from Moebius syndrome, an extremely rare neurological disorder that causes severe…

Continue Reading Billiard Player with Moebius Syndrome Takes the Gold

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