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 or 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 MFOMS website is a great place to get started, not only in learning about Moebius, but also in learning more about the people who have it and actively becoming part of the community. As a person with Moebius Syndrome, I found it rewarding to be able to pull up pictures of other individuals around the globe who have the same disability as I have, because it instantly made me feel not so alone in my daily struggles. I also believe that the site is very professional in that it allows all viewers to provide active feedback, create new resources and continue to spread awareness for this rare illness.”
– Jon Fisher, Aurora Col, Adult with Moebius Syndrome
“I like how the Many Faces Of Moebius Syndrome community and website unites all of us with Moebius Syndrome and gives us a goal to achi... read more
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... read more
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... read more