Welcome to the official page for Moebius Syndrome Awareness Day (“MSAD”) 2014. The purpose of this day is to raise awareness about a rare condition that affects approximately 5,000-10,000 individuals worldwide. By spreading awareness about the syndrome and those living with it, we hope to not only educate the public, but also increase awareness and sensitivity toward those with the condition. Please see below for more information about this special day, browse the links above, or visit one of our partner organizations, the Moebius Syndrome Foundation or the Moebius Research Trust.
• What is Moebius Syndrome?
• How did Moebius Syndrome Awareness Day get started?
• What does the Many Faces of Moebius Syndrome organization do?
• How can I get involved in promoting and celebrating MSAD ‘14?
• Testimonials and personal reflections on MSAD.
• A very special Thank You.
What is Moebius Syndrome?
Moebius syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.
People with Moebius syndrome are of normal intelligence, although their lack of facial expression is often taken to be due to dullness or unfriendliness.
It is estimated that there are between 5,000 to 10,000 cases of Moebius syndrome worldwide. The cause of Moebius syndrome is still unknown.
How did Moebius Syndrome Awareness Day get started?
Moebius Syndrome Awareness Day is held every 24th of January, as it is the birth date of Professor Paul Julius Moebius who first diagnosed the disorder in 1888.
The concept of a worldwide Moebius syndrome awareness day in which people are encouraged to wear purple and spread awareness about the syndrome originated from The Many Faces Of Moebius Syndrome, an organization run by Tim Smith from Virginia, USA and Gavin Fouche from Cape Town, South Africa - both who have Moebius Syndrome. Most of their organization and preparation for the event is done through social media platforms such as Skype, Twitter and Facebook. Smith and Fouche have never physically met, but both share the same passion for spreading education and awareness about Moebius syndrome which will enable those affected by it to lead better lives, they believe.
The initial idea was pitched to Smith by Donnie Downs, a father of a son who is affected by Moebius syndrome. "People were a bit skeptical about the idea at first," says Smith, "Nobody could really see how raising awareness could benefit those like us who are affected by Moebius syndrome."
In its first year an Australian television network ran a story on a boy who had Moebius which was then picked up by news media in the United States causing an unbelievably large number of hits to The Many Faces Of Moebius Syndrome website in its first 24 hours. "It was quite surreal to see words that I had written appear in an American newspaper on the other side of the world." Says Fouche.
Many who are affected by Moebius syndrome - both young children and adults - now use the day as a means to educate their teachers, classmates, friends and colleagues about Moebius syndrome. Where once there were only feelings of alienation and unacceptance there is now a sense of self-pride for both children and parents of children who are affected by the syndrome.
"We want to take Moebius syndrome out of the Dark Ages," Says Fouche "We want to show the world that, despite our differences, those of us who have Moebius syndrome are just as normal as the next guy."
Both the Moebius Syndrome Foundation and the Moebius Research Trust, fellow organizations specializing in the scientific research into the condition and the assistance to those who have it, are in full support of Moebius Syndrome Awareness Day.
"Moebius Syndrome Awareness Day has become more successful than I ever dreamed possible. It took off like wildfire and spread right around the globe. Each year it gets bigger and bigger and more people get involved," Says Smith.
The mission of the Many Faces of Moebius Syndrome is, "To create a better tomorrow for ourselves and our children through education and public awareness."
In addition to promoting the Moebius Syndrome Awareness Day each year, the The Many Faces Of Moebius Syndrome organization also runs their annual Moebius Syndrome Holiday Heroes campaign from November through January, highlighting those who are affected by Moebius syndrome. To see this year’s “Holiday Heros”, please click here.
New for 2014, the organization has also launched a new Moebius Syndrome Ambassadors program which is a group of individuals chosen from around the globe who will raise awareness about Moebius syndrome through various means. Click here to learn more.
How can I get involved in promoting and celebrating MSAD ‘14?
"It's all about spreading awareness; anyone can participate” says Tim Smith. “People can do something simple, like pass out flyers or wear purple to show their support." But it doesn’t stop there! Many families, relatives and supporters have gotten involved in years past, rallying around those in their community with Moebius syndrome. Many times, individuals will work with local media outlets to run stories about Moebius, while others hold awareness events at schools or places of business. Most of all, people help spread the word on social media sites, commonly changing their profile pictures for the day, and posting status updates about the condition. The goal is to expose as many people as possible to the condition so there will be more education and less misunderstanding in the general public.
Want to help celebrate MSAD with this official 2014 Moebius Syndrome Awareness shirt? Just click here to order directly from Fresh Printz, the official provider of MSAD clothing. On Jan. 24th, make sure to wear your shirt with pride, telling everyone you know about Moebius and the special day honoring those with the condition.
If you’d like to print literature for your school, business or organization, please use one of the resources below:
• Download a copy of our 9 page e booklet "Moebius Syndrome Awareness 101"click here
• Download a PDF copy of our 2014 press release: click here
• Download a copy of a flyer: Flyer One - Flyer Two - Flyer Three
• Print an “Awareness Card” to pass out (Copy & Paste)
Testimonials and personal reflections on MSAD:
24 January is not only the birth date of Paul Jullius Mobius, but it also gives rise to the annual celebration of an Awareness Day for children / adults suffering from Moebius Syndrome. This was the day our lives were put on course -part of the same journey, with Paul Mobius as the Pilot, we the passengers.
The realization that word around Moebius Syndrome has spread brings a smile upon my face. Somewhat 16 years ago, and longer, this was a much feared disorder. The diagnoses were dreadful, parents were sent home without any hope, advice or information. Within the medical fraternity you were told to institutionalize the child – not to love him/her – don't get any hopes – it's only voluntary reflexes – he will be blind or will not even be able to be fed. He is not educable – he will be a complete vegetable. Who could survive against these odds?
What was left for parents to hold onto but Prayer, love and a Godly miracle! With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. In hindsight, any challenge or disability to me means loving that person unconditionally, so let us step up and spread the awareness. Our appeal is simple – in support of those living with Moebius Syndrome, wear purple on 24 January and share your knowledge about this disorder. Your contribution can make a difference. 24 January is now also a day of Celebration in the Life of those living with Moebius Syndrome. Thank you to all who have made this day possible and for giving our children a new meaning to life.
- Kay Von Willingh
Moebius Syndrome Awareness Day (MSAD) is important to me for many reasons. The first, and foremost, reason is my beautiful little niece, Dakotah. She was born in October, 2008. Like many of the other families, we learned of a new syndrome that day that very few had ever heard of. I remember the call from my sister, Stacey, telling me Dakotah was born and that something was wrong. (Dakotah was fortunate enough to be born in a hospital with a doctor that was aware of Moebius Syndrome, so she was diagnosed within 24 hours) To better understand what Moebius Syndrome was, I searched the internet and found minimal information about it. Thankfully, I found the Many Faces of Moebius Syndrome and Moebius Syndrome Foundation websites. The websites have brought many families together through love, support and sharing of personal knowledge and experiences, however, with very little information available to families otherwise this day is important, and much needed, to give a voice to the syndrome and the families who live it each and every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding to those around them, and within the medical community as well.
- Andrea (Sweetwood) Smith
When I was asked what MSAD means to me. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections. I think of my friend Tim Smith, who has been informing masses of people about Moebius Syndrome for years. MSAD 2011 meant (to me) that a common goal within the Moebius community had finally been met. It also means that we as a community have something that we can be proud of.... And I am just happy that my family and I can share in and be a part of something that is bigger than myself.
- Donnie Downs
I was born in the Dark Ages ..1948.. with a disorder that I found out much later as an adult.. actually had a name ...Moebius Syndrome. So the greater part of my life has been spent totally UN-WARE of what Moebius Syndrome means to anyone...especially to me! Then in 2010 with a great deal of support .. I was fortunate enough to attend my first Conference in Denver. I finally realized “my Moebius” is shared by many others AND I was no longer alone! Moebius Syndrome Awareness Day .. as every new day is for me now .. a chance to share more of myself and that “awareness” with others.
- Alice Goeldner
To me Moebius Syndrome Awareness Day (MSAD) provides an opportunity for my friends and associates to have one of those AHA moments. You know the ‘aha’ feeling when your first science experiment works, when you first see a mother cat give birth to kittens, or when you get the first kiss by a member of the opposite sex not a relative (unless you’re from Arkansas). I want others to begin their AHA moment with Awareness; understanding what Moebius Syndrome is all about; its different manifestations, and being aware that by and large most Moebius folks are normal in all other respects. Next I want them to move to Honesty – honestly recognizing the worth of each individual and honestly believing that, “Except by God’s Grace go I.” It’s only through awareness and an honest appraisal that others can then move on to full Acceptance of those of us with Moebius Syndrome. I pray as we approach MSAD 2012, we’ll all strive to bring one of those AHA moments to those we know and/or influence. God bless!
- David Moffitt
The media have made a number of illnesses well known to the public such as cancer, mental health illnesses like Bipolar Disorder and Schizophrenia and that is just to name a few. Though in most cases Moebius Syndrome isn't life threatening it is still a syndrome that affects people all around the world emotionally and physically.
Every day people usually have no clue what Moebius Syndrome is, so sufferers with severe facial paralysis sometimes will get looked at strangely while innocently walking down the street, going about their day. Often teenagers in high school will get bullied because having Moebius Syndrome makes them look different from others. This can have a serious affect on people, making them feel even more anxious about their appearance. It is hard enough having to wake up everyday knowing there is no cure to this syndrome;they don’t need someone constantly reminding them of that.
Sometimes moments of sadness just hit people when they remember they will never be able to smile, they will never be able to show facial expressions such as happiness or sadness. It is hard when others don’t understand the syndrome; they might assume a sufferer is moody or unfriendly by the appearance of their face when this is not the case. Most of the time it is really hard to let people in because it can be awkward breaking the ice, not knowing quite how to explain yourself to other people so that they can get a better understanding of the syndrome. And when you do explain yourself to someone you have to explain yourself to someone else and this can be tiring.
Having a Moebius Syndrome Awareness day will benefit the public so much, its not a common syndrome so putting it out there to the world will just make people with the syndromes life a little easier. That way the world is educated and familiar with it and hopefully they will be able to recognize someone with Moebius Syndrome. Hopefully they will be able to realize that people with Moebius Syndrome and perfectly intelligent and intellectual, and that they lead normal lives. This will also benefit Doctors who will be able to diagnose new born babies and infants quicker.
Having an awareness day will also be great for people with the syndrome who are unaware that there is a Moebius Syndrome website and group on Facebook that they can go to if they need some support. This can be a very positive experience as they can interact and meet up with others with the syndrome; this can help people feel less isolated. Finally the more people that know about the syndrome the better it will be to find what causes Moebius Syndrome as this has been yet to be discovered.
- Loriana Sofia Firth
I was surprised by how much Jasper got out of MSAD. As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally. The pride in his face from being the MFMS poster boy for the day was incredible- it dawned on me then that MSAD was important for him because it gave him the opportunity to celebrate who he is BECAUSE of Moebius syndrome not despite it. I have always tried to ensure that Jasper never feels as though he is deficient or that he needs 'fixing', MSAD helped to consolidate this.'
- Lauren Broadhurst
A few months ago I was watching an old episode of ER where a young boy with Down Syndrome is brought into the emergency room. Immediately the TV doctor makes a decision on how his patient should be treated after considering a few risk factors involved in having Down Syndrome. This is exactly why I think there should be a Moebius Syndrome Awareness day. It's mostly likely that if the situation were real the doctor wouldn't even know what Moebius Syndrome is, never mind knowing how to treat someone with it. I believe not only could a Moebius Syndrome Awareness Day teach doctors how to treat those with Moebius medically, it would teach others how to treat those affected by Moebius socially as well.
- Gavin Fouche
The 1st Annual Moebius Syndrome Awareness Day was an invaluable day for our family. When our son was diagnosed, only our neurologist had heard of Moebius Syndrome. I believe that with the HUGE effort of the entire Moebius Syndrome community, MSAD allowed us to educate countless people across the world, including our family and friends that were unaware of exactly what Zayden’s diagnosis meant. The outpouring of coverage from news outlets and the support from complete strangers was overwhelming and made me proud to be a part of such a monumental day.
Our family is looking forward to helping to MSAD an even bigger success this year.
- Jenn Foster Wise
Moebius Syndrome Awareness Day can best be described as a huge gift to those who have longed for more information and respect. Parents, relatives, friends and fellow Moebians made MSAD 2011 a huge success through their hard work and creativity. Their efforts piqued public interest, including the media. It doesn’t have to stop there. Let’s make January 24, 2012 known throughout the world so parents and health care providers can make informed decisions when a diagnosis of Moebius Syndrome is made.
- Holly Williams
What does Moebius Syndrome mean to me? It has meant, first of all, that life was a bit harder for me than others. It was and is harder for me than for others. It was and was harder for me to say certain words, to do certain things. When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either). At the same time, having Moebius Syndrome has allowed me to get to know some wonderful people, people whom I never would have known otherwise—of course I speak of the Moebius Community. And I think having to overcome the obstacles that I and all of us face, has made me tougher, a bit more resilient, than I would have been otherwise. I'd like to think all these things, added up, have made me a better person. All of us who have Moebius Syndrome are still human beings. We have our faults. But we understand diversity—we are an excellent example of diversity. We understand achieving despite obstacles, we understand climbing mountains, striving, trying. Having Moebius doesn't make life easier. But the entire Moebius community and what it achieves daily shows—life sure is worth living.
- Kevin Smant
Please consider joining us on Facebook using the icon above. Each time we get a new "Like" we are spreading awareness about moebius syndrome one step further. When we spread awareness we become better known. As we become better known people start to see us for our commonalities not our differences. More doors are opened for us and we are able to do more towards our mission goal of "Creating a better tomorrow for ourselves and our children through education and public awareness!" We have to keep going and growing. To do this we set our goals a little higher each year. This year our goal is 6000 likes to our Facebook page by MSAD on January 24 2014. If you haven't already done so please click on the image above and like our Facebook page. Individually we are a drop of water. Together we are an ocean. You can also follow us on Twitter to keep up with the latest information.
A very special Thank You:
In four short years Moebius Syndrome Awareness Day has gone from an idea to an international event. You can find mention of it in different places on the web such as the Awareness Day Wiki http://en.wikipedia.org/wiki/Awareness_day#January.
For Moebius Syndrome Awareness Day 2012 we reached out to other rare disease groups and told them about our Awareness Day. Two of the first groups to respond to our emails were, NORD, http://www.rarediseases.org/, and the Global Genes Project, http://globalgenes.org/. Both groups are heavily involved in Rare Disease Day., http://www.rarediseaseday.org/. Both groups replied with similar emails. Essentially saying, “How can we help?”
Many Rare Disease Groups have their own Awareness Days. We are all part of a very large choir. On our individual awareness days we are the lead vocals in the choir. On Rare Disease Day we are a part of the choir making beautiful music together.
Moebius Syndrome Awareness Day and the Many Faces of Moebius Syndrome would not have become successful without the support and friendship of NORD, Rare Connect, The Global Genes Project, and many other Rare Disease groups around the world.
I know we don't say it often enough or loud enough. “THANK YOU TO ALL FOR YOUR CONTINUED SUPPORT AND FRIENDSHIP.” On January 24th 2014 we will all be “Smiling with our Heart.” On February 28 2014 we will “Join together for better Care.” http://www.rarediseaseday.org/article/theme-of-the-year-care
Here are two letters of support for Moebius Syndrome Awareness Day given to us 2012.
Global Genes Project In 2012:
World Rare Disease Day falls on a truly RARE day, February 29. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. to join in the 'Wear that you Care' campaign of support. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! Wear Jeans, Help bring Kids Hope. Log on to www.globalgenesproject.org for more information on how you can get involved to build awareness for RARE disease and The Many Faces of Moebius Syndrome. It's easy and fun to make a difference for this community in need! Our goal is to have One Million supporters pledge to wear jeans on February 29 2012. The R.A.R.E. Project team members are currently building the tools for a much needed program called 'RARE Meet Up's'. We are currently looking for rare disease advocates to contact us if they are interested in participating in a 'RARE Meet Up' group in their local area. The diseases may be different, but the challenges and struggles are the same. For more information log on to www.rareproject.org. The 7,000 Bracelets for Hope, campaign is still going strong! We will continue through 2012 with the goal of connecting 7000 RARE families with 7,000 new champions for the cause. For more information please visit our website at www.globalgenesproject.org. The R.A.R.E. And Global Genes Project team members wish The Many Faces of Moebius Syndrome much success on your awareness day on January 24, 2012! We look forward to joining your efforts on this day and on February 29 2012 to build awareness, educate, and unite!'
-Amy Grover- Dir, Community Development R.A.R.E. Project-
Alone we are Rare. Together we are Strong:
Alone we are Rare. Together we are Strong Each year, on the last day of Feburuary (Feb. 29 in leap years and Feb. 28 in other years) the world celebrates Rare Disease Day, to promote awareness of rare diseases as a public health challenge that cannot be ignored. Rare Disease Day 2011 touched minds, hearts and souls across the nation and 2012 that momentum continues. Advocacy days, like Rare Disease and the Moebius Syndrome Awareness Day, are key components to spreading messages of awareness, advocacy, and hope both within the community and to the public. The National Organization for Rare Disorders (NORD) is the US sponsor of Rare Disease Day. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Since 1983, NORD has worked closely with our patient organization members, which now number over 160. Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. Now, the concept is rippling out around the world; in 2011 46 countries participated. The growth in just a few short years has been remarkable. Last year, the U.S. Senate adopted by unanimous consent a resolution designating February 28, 2011, Rare Disease Day across the U.S. Thanks to an amazing grassroots campaign, proclamations were obtained in 48 states and similar documents were obtained in the two other states. Other successes this past year were obtaining more than 860 partners and ambassadors who represent patients and their families, patient organizations, government entities, medical or other professional societies, or companies that support the theme of the day. These individuals and organizations contributed to a media and social media blitz where stories, pictures, and videos were shared. Rare Disease Day was also an opportunity to promote the Rare Disease Congressional Caucus that will help focus attention on rare diseases and related needs, such as research. Most importantly, however, it was an opportunity to raise awareness about rare diseases. Every story that was shared, press release posted, or pin worn was an opportunity to raise awareness and teach others. In 2012, we anticipate even more opportunities to spread the message about Rare Diseases. We will rely on the mobilizing capacity of our advocates and networks across the country as we truly cannot do it alone. NORD wishes The Many Faces of Moebius Syndrome and it's partners the best of luck on your awareness day; all of us together have an opportunity to unite our voices for the common themes of awareness, education, research, and hope! To learn more about the US initiatives supported through rare disease visit www.rarediseaseday.us or the global initiatives at www.rarediseaseday.org.
-Tai Spargo- MPA 4. Special Projects Coordinator National Organization for Rare Disorders (NORD)