Emanuel Syndrome Awareness
We chose the 11th month and 22nd day for our Emanuel Syndrome Awareness Day, to represent chromosomes 11 & 22 which are involved in Emanuel Syndrome (ES). We have been holding our annual awareness day since 2010 and use this opportunity to share photos, stories, facts and hold events to share about our amazing children and make people aware of this rare chromosome 22 disorder.
While carriers of the balanced 11q22q translocation are quite common (it is the most common recurrent balanced reciprocal translocation known in humans), Emanuel syndrome, the unbalanced version of the translocation, is considered a rare chromosome disorder.
How Rare is Emanuel Syndrome?
While disorders like Down syndrome occur in 1 in 800 births, Emanuel syndrome is far more rare. There have been more than 275 cases reported in the scientific literature since it began to emerge as a disorder dating back to the early 70s (and some cases from the late 60s which cannot be definitively confirmed). It is estimated to occur in 1 in 110,000 live births (Ohye et. al., 2014).
Raising Awareness
Each year on November 22 (and in the weeks leading up to the day) we take the time to post about Emanuel Syndrome on Facebook and Instagram, tweet, share statistics, information, articles, photos, videos, stories, make the local paper, host online meetings in different time zones, hold fundraisers, have family meet-ups and marvel at the worldwide flood of “purple and blue on 11/22”.
Once upon a time, our disorder was unnamed and it was difficult for families to connect with each other. Now, we have members all over the world and we celebrate as one big family. We embrace and continue to extend and grow the community that we have built for our family members with Emanuel Syndrome and educate others about the 11/22 translocation and Emanuel syndrome.
We invite you to join us!
How can you participate and raise awareness? Share your photos and child’s bio with us and we will add you into our yearly photo blitz in the template we use that year. Here are some examples of past campaign photos:
Facts about Emanuel Syndrome
From Canada to Japan – we continue to raise awareness about this rare chromosome disorder year after year.
Want to learn more? Participate? Contact us at c22central@gmail.com and we will get you set up!
Emanuel Syndrome Can Campaign
Emanuel Syndrome Bio’s
YES Campaign!
Join our Emanuel Syndrome Support Group to connect with other Emanuel Syndrome families.