Countdown to Moebius Syndrome Awareness Day 2021
What is Moebius Syndrome Awareness Day?
Moebius Syndrome Awareness Day is an annual event created by the Many Faces of Moebius Syndrome (MFOMS) and celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first reported the condition in 1888.
Moebius Syndrome Awareness Day History
Moebius Syndrome Awareness Day Photos
MSAD 2021 Buttons, Bracelets,& Bumper Stickers!
MSAD Sharable Social Media Photos!
MSAD Stickers, & Iron On Transfers!
If you don’t want to purchase a MSAD 2021 Awareness Shirts then please consider making one of your own with our photos.
MSAD 2021 Flyers!
Moebius Syndrome Awareness Day Testimonials:
“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 Moebius Syndrome Holiday Hero on January 24th 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, Australia.
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, Nekoosa, Wisconsin –
Moebius Syndrome Awareness Day letters of support:
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 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 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 bedifferent, 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!
Dir, Community Development