Please join us in celebrating the second annual Moebius Syndrome Awareness day to be observed worldwide on January 24, 2012.

The first ever Moebius Syndrome Awareness Day held last year was a resounding success and was celebrated on every continent, including popular social networking sites Facebook and Twitter.

January 24 is a significant date in the history of Moebius Syndrome as it is the birth date of Professor Paul Julius Mobius, the neurologist who first diagnosed the disorder in 1888.

Once again the three Moebius Syndrome organizations – The Many Faces Of Moebius Syndrome (www.manyfacesofmoebiussyndrome.com) The Moebius Syndrome Foundation (www.moebiussyndrome.com) and the Moebius Research Trust (www.moebiusresearchtrust.org) – have joined forces in full support of this worthy cause.

If you were to gather a group of adults, like myself, who have Moebius Syndrome in a room – or even parents of children who have it – you'll find that most of us would tell you tales of how we thought that we were the only ones in the world with it, how this sometimes made us stick out in society like the proverbial sore thumb, and what joy and elation we felt when we met others whose lives had also been affected by it for the very first time.

The aim of having a Moebius Syndrome Awareness day is, of course, to spread awareness about Moebius Syndrome but it is also about celebrating the lives of the parents and children, the mothers and fathers, and the brothers and sisters whose lives have been both touched and affected by it.

This year we hope to make Moebius Syndrome Awareness Day an even bigger and better success than it was last year. - we want to colonize Facebook, take-over Twitter, conquer the world and paint it purple in support of Moebius Syndrome awareness for a day!

We want the world to know what Moebius Syndrome is; we want the world to know that even though we might look different, we are exactly the same as everyone else who lives in it; we want the world to know that we have the same needs and wants, hopes and dreams as everybody else; we want the world to know that our smiles come from our hearts, but despite this laughter still comes from our mouths.

So on January 24, 2012 please wear purple, read up on Moebius Syndrome if you have never heard of it, make others aware of it, or just give someone with Moebius Syndrome a smile or a hug and tell them how special they are.

Gavin Fouche



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 Special Projects Coordinator

National Organization for Rare Disorders (NORD)



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 connectin 7,000 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!

R.A.R.E. Project

-Amy Grover-

Dir, Community Development



This is a facebook site where you can add you name and write on the wall to be part of the Moebius Syndrome Awareness Day Activities! www.facebook.com/events/163279393725050

If you look at the right hand top side of the page you will see an "Invite Friends" button. Please invite all of your facebook friends. The More the Merrier.

On January 24th 2011 over a thousand people on facebook pledged their support to wear purple on Moebius Syndrome Awareness Day. Here is your chance to do it again.!!! www.facebook.com/events/146687335394208

If you look at the right hand top side of the page you will see an "Invite Friends" button. Please invite all of your facebook friends. The More the Merrier.

 The Official Moebius Syndrome
Awareness Day Shirts are now on sale and are available in all sizes.
Click Here to learn more.



To get your free copy of our 2011 Many Faces of Moebius Syndrome Holiday Magazine CLICK HERE 50 pages of interesting, fun, and facts, from the Moebius Syndrome Community!

Click Here to view the highlights from Moebius Syndrome Awareness Day 2011

This is a power point presentation that Robbie Gartner- Curtis will be using in the schools for Moebius Syndrome Awaress Day! To view it you will need a power point viewer. You can click here to download a free viewer from Microsoft.  Click Here to see Presentation 1! Click Here to see Presentation 2